TW/CW: This episode includes discussion of multiple miscarriages and brief mention of suicidal ideation.
Alicia Young (aka AP) is a writer, blogger and public speaker who lives her life out loud and unfiltered. She has built her platform to include in-depth, first-hand experiences of mental health concerns, body diversity, being a special needs mom (one of her sons has Tourette’s syndrome, ADHD, and is on the autism spectrum), and navigating life with chronic illness and disability (including autoimmune disease and osteoarthritis). Like Lauren, she was diagnosed with Hashimoto’s disease — but by the time she was treated, she had to have her thyroid removed because it had formed a goiter. Additionally, she has had harrowing birth experiences as a plus-size Black woman, and candidly shares her story — from multiple miscarriages to birth itself — here. Alicia has a vested interest in teaching plus size women how to advocate for their health care in the face of weight-discriminatory culture in healthcare (and beyond). As a fat woman living with disability, she has been told she has to lose weight (via a gastric sleeve) before she will be given a much-needed hip replacement — and has been navigating the experience with grace, honesty, and total candor. AP also has a passion for fashion and beauty, specifically for women of extended sizes. Through her blog and social media platforms, she encourages and inspires women to shed stereotypes and step out of the boxes society has dictated for them — whether they exist in larger bodies, or not.
Key links mentioned in this episode:
Tune in as Alicia shares:
- that she was diagnosed with seep apnea in 2010
- that in 2016, she started having pain in her body during a pregnancy — and was diagnosed with osteoarthritis
- that she grew a goiter in her neck and was later diagnosed with Hashimoto’s disease
- that she miscarried her son’s twin and has had 8 miscarriages, as well as a blighted ovum
- that despite all her miscarriages, no doctors ever flagged fertility issues in her medical file until she had her last son
- the medical PTSD she developed in relation to her fertility because of her many miscarriages
- that fat women have to fight harder to be treated normally when it comes to pregnancy — because so many doctors resort to C-sections before they become necessary
- that as a fat Black woman, she has been discriminated against in multiple medical scenarios — from being told to lose weight, to being put on unnecessary medications, to being ignored and not believed (re: pain, labor, and more), to procedures performed while she was unconscious that were not communicated — to facing her own mortality
- that in hindsight, many of her later birth experiences were likely influenced by mounting thyroid concerns
- that she developed Asherman’s syndrome in the midst of her pregnancy issues
- how her weight, age, and race played into delays in treatment tantamount to medical malpratice
- that she’s been told she needs a hip replacement because of her osteoarthritis, but her doctors are requiring her to get a gastric sleeve (to lose weight medically) in order to give her the replacement
- how she feels about weight loss surgery as a proud fat woman — and how this new experience relates to her struggles with eating disorders
- how food deserts affect health — and how food deserts often surround Black communities and communities of color
- why it’s so important to know your family medical history
- why she uses mobility aids
- what it’s like to be a special-needs mom in the midst of her many personal health concerns
- that she’s been committed to the psych ward before (for a week, about a decade ago) — and recognizes the importance of mental health in her total wellness journey
- her tips for living a full, self-aware life — from one’s own health, to being a special needs momma
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: All right guys, thank you so much for joining us. I am here today with Alicia Young. You may know her from her blog, APY Blog. And from her amazing beauty line. She is an entrepreneur. She also lives with multiple chronic illnesses, and is also a special needs mom, and she’s going to tell us all about it. So Alicia, thank you so much for joining us.
Alicia: Thank you for having me. I appreciate it.
Lauren: It is such an honor and such a pleasure to have you on the show today. We were connected through Lorna, Cystum of Curves. And I’m just so glad that we were able to get together and chat. There’s so much rich history in your medical file for you to share with us.
Alicia: Oh, yes! (laughs)
Lauren: Oh yes, indeed! So, let’s start from the very beginning. This is where I always love to kick things off. Can you tell us when and how you first realized that your health was going a little funky, and what steps you’ve since taken to control it?
Alicia: I think things didn’t really come into play for me until after my last pregnancy, which was in 2016. I’ve had a diagnosis of sleep apnea since 2010. But besides that, I felt what I thought was generally healthy and normal. But in 2016, during my pregnancy, I started having pain in the hip and lower back, which I thought was just pregnancy — but it wasn’t. It ended up being osteoarthritis. And then, shortly after delivering in 2016 is when the thyroid issue came to the forefront. It was simply because a goiter has started growing in my neck. Prior to that, I didn’t have any indication or anything that I thought was an indication that I had thyroid disease. And so that happened.
And then it was like the bottom fell out.
Lauren: Absolutely. And because you had the goiter, you had to have your thyroid removed, right?
Lauren: So it’s really interesting, because you and I have gotten to know each other a little bit prior to starting this interview. There’s a lot of history here with your health that actually ends up revolving around your pregnancies. You’ve got three kids, and you’ve had some miscarriages in between these births. It seems like, actually, some of those miscarriages could have been avoided and may have occurred because of underlying symptoms that were never tested for, right?
Alicia: Right. I’ve suffered a total of eight miscarriages.
Lauren: Which is a high number.
Alicia: It’s a high number. I am very fertile, believe it or not, it’s amazing! (laughs) I had my first child at 18. And in between that, and my son — he came five years after her — there were two to three miscarriages. Now, the interesting thing about that is, for the most part, most of those pregnancies ended really early, anywhere between the four- and eight-week mark. But I had two that went further than that; they both ended around the 16-week mark, which is four months.
Lauren: That’s a pretty far way in.
Alicia: It is, and that was tough, because that I got to see baby moving and kicking and was just beginning to feel those flutters. So it was a very tangible pregnancy. And I had one blighted ovum at some point. That is when the fetus is not fully developed, but the sac does. And throughout all of those losses … and I also want to mention, when I was pregnant with my middle child … my son is 11 … I miscarried his twin at nine weeks of pregnancy. He survived. And when I first moved down to Georgia, I ended up in a hospital my first day here, and had lost one at seven weeks.
And that baby continued to grow until 16 weeks, and then she died.
Lauren: And yet, despite the fact that in your file, there was a history of late-term miscarriages, nobody ever flagged this as an issue?
Alicia: No. So I got fortunate — unfortunately, at the wrong time. Right before I was getting ready to move from Philadelphia to Georgia, I found out I was pregnant.
Lauren: And this was with your second son, right?
Alicia: Yes. My second son, my third and last baby. Before he came, this was the pregnancy right before it. I found out right before we were moving in 2014. So I got lucky enough to have a doctor who flagged me as high-risk and was, like, “Okay, we’re going to need to run some tests and get you in for an ultrasound as soon as possible so we can see how things look.” But in that process … that was June, and we moved in July.
Lauren: Which means there was a change in insurance because you’re moving to a different state.
Alicia: We were moving down south, so I hadn’t even established my footing in Georgia and I was going into the emergency room my first night here. I ended up at a DeKalb Medical Hospital, and the staff there was really kind, really caring. They charted everything, but this is the emergency room so you’re not really building a rapport with anybody. One of the things they told me was, if you’re miscarriaging, there’s nothing we can do about it. You just have to put your feet up and let this happen.
Lauren: That’s hard enough news to swallow when you’re dealing with a late-term miscarriage.
Alicia: And at that point, I wasn’t late-term, I was only seven weeks. So when I got there, and they did the ultrasound, at first they didn’t see the other baby. They were just like, “Okay, well, we can see where there was a baby, so we know you’ve lost a child.” And then she went looking, and said, “Oh! We have another one and it seems to be doing well!” So she sent me home. I was on bed rest for a few weeks. At 11 weeks, I came off bed rest — I’d had about three weeks of bed rest. I had gone to a followup … I finally had an OB/GYN. The ultrasound was beautiful. She was moving, she was kicking, she looked healthy and thriving. Heart rate was normal. When went back for my 16-week mark, I found out that she had also passed. But there was no bleeding. There was no actual miscarriage. There was no indication, no way for me to know that she wasn’t viable anymore.
That was really tough, because I was going in for an ultrasound, but it was almost like something in my spirit was really heavy that day.
And I remember calling my husband, because he was still in Philly at the time, from the waiting room … “I’m really worried about this ultrasound.” And he was just, like, “Relax, it’s gonna be okay.”
Lauren: And also at that point, you’d been through enough of that. You already had a little PTSD associated with it.
Alicia: Absolutely. I couldn’t relax, and when he went to do the ultrasound, I knew … I knew immediately because he was searching way too hard to find the heartbeat. I’m not sure if you’ve ever seen an ultrasound, but once a baby’s of a size, you can see the baby on the screen. You hear it moving. I knew once I didn’t hear it right away, I knew what was coming. I knew he was going to tell me. And even in that moment, I was not ready to receive that information. And then I had gone home, and I didn’t get scheduled for surgery until about three days later. They said, “We want to see if your body will spontaneously expel this.”
Lauren: Yeah, massively pass it.
Alicia: I had to go in and be induced. And that was really tough.
Lauren: Yeah, because you’re actually going through labor to give birth to a child that you can’t …
Alicia: That I can’t bring home. And then in that process, they ended up having to put me under to surgically remove her, because of all the scar tissue that I had from previous C-sections. So that was really devastating.
Lauren: Let’s just circle back to this whole C-section thing. We know that C-sections are overused in the States. There are statistics up the wazoo about this. But you’re someone, it seems like, who had been given so many C-sections that you had scar tissue that required a C-section.
Alicia: I’d had two C-sections at that point. My first was at 18. And part of the problem, I think was, I was always fat.
Different degrees of fat, but I’ve always been fat, my entire life.
And even though at 18 I wasn’t the size I am now, I was still viewed as fat to the medical system. So instead of allowing me to labor naturally the way that they would a smaller woman … because let’s be real, I’ve had many discussions with fat women who have been pregnant and this is their experience, that we have to fight harder to be treated normally when it comes to pregnancy.
Lauren: Not even taking into account in this part of the discussion the fact that you’re also a woman of color. In a maternity ward. Which we also know puts you at a disadvantage. So you’re a fat woman of color. No surprise you’re being mistreated.
Alicia: Well, first of all, when I was in labor with my first child, I told my mom what I was feeling. She took me to labor and delivery. They told me I wasn’t in labor. They sent me home. So I labored at home for three days without any pain meds because they kept sending me home.
Lauren: Is this part of the ‘black women have a higher pain tolerance’ BS?
Alicia: More or less. “This young black girl is being a hypochondriac. She’s a teenager.”
Lauren: Real fun. Thanks, medical system.
Alicia: The equipment that they had to monitor contractions wasn’t viable for my girth. I had a belly, I was fat. This was Yale, by the way, people; this is prestigious Yale University Hospital. And so by the third day when they go to do my ultrasound, and she’s looking … now mind you, this is after being told by a doctor that I was too big for my pregnancy and my mom needs to watch what I’m eating because I was gaining too much weight … and “teenagers usually have underweight babies.”
Alicia: So when they do my ultrasound, the doctor who was on staff this particular time was looking, and she’s, like, “You look like you’re losing amniotic fluid.”
Now I didn’t know that your water doesn’t break the way that it does on TV; your water can break and leak for days.
That’s what it had been doing for three days. So she’s looking, and she’s, like, “We’re gonna probably induce you in the morning.” Because at this point, I was two weeks overdue, first of all. And she’s, like, “And it doesn’t look like baby has much room to move around. So we’re going to admit you tonight, and put some gel on your cervix to help soften your cervix.” Then she said, “Did anybody take a look at you internally?” And I said, “No.” And she said, “Well, I’m going to check to see if you’re dilated.” I was four-and-a-half centimeters dilated, which means I was in active labor. So she was, like, “Oh, no, you’re in labor. We have to admit you.” It took them three days to figure out to internally check me or figure out a way to monitor my contractions.
Lauren: Quick question, out of curiosity … was that the first female doctor you came across in that experience, too?
Lauren: Okay, so that had nothing to do with it.
Alicia: That had nothing to do with it.
Lauren: They’d just internalized fat phobia and racism.
Alicia: Absolutely. And even my level, my threshold of pain, was dismissed. I’m telling them, “These contractions hurt.” And they’re telling me, “Well, they’re not showing up on the chart.” So what they ended up doing, because they didn’t believe that I was really contracting the way I said I was … they gave me something called Pitocin, which is meant to increase contractions. So now, you have me hooked up to an IV, which means I can’t walk around like I should be, to help push the baby out.
Lauren: To help get the baby out, yeah.
Alicia: So now I’m laid up in a bed, with an IV running, with these monitors attached to me because now they want to give me this drug. I had a staff change, and another nurse came in and she’s, like, “Wait, wait a minute. I have to look at something.” I don’t know what she did … she took some wires and put them inside of me. Then you could see my contractions jumping off the chart, and she’s, like, “Oh my God, these are really strong contractions. How long has this been doing this?” I’m, like, “Since before the Pitocin.”
Lauren: For three days, thank you!
Alicia: And the Pitocin’s making it worse. They’re coming closer and closer together. But it never dawned on anybody that I could be laboring in my back, so we need to turn this monitor around to your back maybe, or even internally monitor you. Which was obviously an option. It wasn’t until the baby’s heart rate started to go all wonky … but now you’ve introduced a drug into my system. And in the meantime, I told them I wanted an epidural. They gave it to me.
I told the doctor, “I still feel this.” And they’re, like, “Oh, this is pressure. That’s not pain.”
“No, I know pressure!”
Lauren: They told you it was pressure and not pain while you were in labor?
Lauren: No, I actually can’t even comprehend that you would say that to a woman giving birth.
Alicia: They’re, like, ”Stop being silly. This is just pressure.” And I’m telling the anesthesiologist, “My right leg is numb. Whatever you did didn’t numb the contractions, you numbed my right leg.” He’s, like, “No, you’re not the doctor. I’ve got this.” I’m just blown away. My mom is trying to keep me calm. And my mom does not engage with people, she’s not confrontational. So she’s just trying to get me to shut up, because I’m cussing and carrying on at this point. I’m screaming.
Lauren: You’re from Connecticut; you take no prisoners!
Alicia: (laughs) I’m, like, “I can’t take this.” So at this point, they’re coming in, and they’re like, “Well, we need to do an emergency C-section.” I did not understand the implications of a C-section. I just knew at this point … I’ve been in labor for like 82 hours, I want this baby out of me. I’m in pain. I’m screaming, and they’re, like, “Sign this paperwork.” I’m not reading this paperwork! I just want to get this baby out! I delivered her. She was nine pounds.
Lauren: That’s a big baby.
Alicia: After the doctor had told me, “You will have an underweight baby because you’re a teenager.”
He did, however, come into my room to apologize to me a couple of days later.
So I was appreciative of that. But even with my whole entire care afterwards, I ended up back up in the hospital about a week later, with an infection. Never mind the fact that I’m in so much pain. I can’t get up, I can’t move. And I’m telling the doctors. I had to take her to the emergency room at some point because she wasn’t passing urine, and I told them, “I’m not producing milk.” “Oh, she could survive off colostrum for this amount of time …” But it’s a week later and I’m still not producing milk. They didn’t know that it had anything to do with my thyroid.
Lauren: Well, I guess this was the beginning of now looking back through the lens of your diagnoses. And having had Hashimoto’s and hypothyroidism, you’re able to look back now and go, oh, that was the cause of all those issues.
Alicia: I ended up back in the hospital with an infection. And of course, I’m in a lot of pain, and I’m telling the doctors, and they’re just, like, “Oh, you’re being silly.” They take my temperature; my temperature is, like, 104.5.
Lauren: Excuse me?!
Alicia: So then they’re telling my mom, “We’re going to admit her. She’s going to be admitted overnight.” So my mom has to take care of the baby. While I’m in the midst of being checked out, my milk decides to come in — which I was really upset about, because at that point, they’re pumping me full of drugs and I can’t feed the baby that. So during this process, I almost died; they had to resuscitate me. I had fluid in my lungs. All this stuff is happening. No one ever gave me a clear answer as to what was wrong with me.
Lauren: For those who are tuning in, in case you’re wondering why the maternal death rate among black women is so high in the US, this is why. It shocks me that I have to have discussions like this, where I’m sitting here and I’m gasping, I can’t believe it. And I’m someone who hears stories about medical malpractice all day! But I’m still sitting here shocked. And I know your experience was even more shocking, and what’s most upsetting is that this is an everyday occurrence, that this is not an uncommon story.
Alicia: It’s not.
Lauren: And that’s unbelievable.
Alicia: What was more frustrating was because I was 18. So at some point, I was out, I was unconscious, and my mom was trying to get information. They wouldn’t give it to her, because I was an adult. So do you know that by the time they released me … they gave me antibiotics and stuff, they told me I had an infection … but they never talked to me about what it really meant. And I wasn’t at an age where I was really thinking to ask those questions. So wasn’t it until five years later, when I was 23, and I was having my second child, and I was having a scheduled C-section now. I was living in Philly by this point, and they’re, like, “We need to get your records from Yale so we know what we’re up against.”
When I got those records, I learned that they had left placenta in utero. And that is why I had that infection, and why I ended up back in the hospital.
Lauren: And they never told you?
Alicia: They never told me, and they performed a D&C on me while I was unconscious, because they had to get the placenta out. And I didn’t know that.
Lauren: That’s a malpractice suit to withhold that information?
Alicia: Technically, when I consulted with an attorney … because you know I did … I had hit my statute of limitations.
Lauren: Of course.
Alicia: So I was really pissed about that. But more so, thinking, within the last five years going to the doctors’ and they’re asking my history … I can’t tell you, yes, I’ve had a D&C. That also predisposes you to scar tissue — which did not make it easier, which also weakens the uterine walls and all sorts of things that can complicate your pregnancies down the line. I didn’t know this.
Lauren: Of course not. And how would you even have known when you were 18? Even if they’d told you.
Alicia: Because they wouldn’t tell my mom what was going on. It wasn’t even as if she could ask me. At the time, I didn’t have a power of attorney, I didn’t have any of those things in place, because I was living at home with my mom; I was a teenager, I had just turned 18 and then gave birth. So that probably was the start of a lot of things. And I just didn’t know. Life goes on. I definitely had more painful periods afterwards and things like that. There was a time my healing took longer.
Lauren: And you’ve even said that there were some overlaps in your symptoms with what goes on with PCOS. But you don’t have PCOS, you were never diagnosed with that?
Alicia: No, never. I know for a fact I was checked for PCOS because there were times I would say things to my doctor, and it was, like, “Well, because of your weight, you’ve probably got PCOS.” That’s the first I ever heard that term. And diabetes.
Lauren: Yeah, well, diabetes. Yeah, that’s one of those ones, “Oh, you’re fat. You probably have it.” Right?
Alicia: Yeah. A couple years after I had had my son and I was putting on all this weight … a year after I got married, I had my son. And I put on a lot of weight, a lot of weight, in a short amount of time. During that time, there was no discussion of … you might have thyroid disease, or anything.
They literally tested me for diabetes 30 times — because they just couldn’t believe, could not believe, I didn’t have it.
Lauren: It’s unbelievable to me that they never started checking your hormones at that point.
Alicia: Never. I can’t remember even having a conversation with an doctor except for this one good doctor that I had been with. Then my insurance changed and she wasn’t my doctor any more. The discussion of hormones literally did not come up until after my last birth in 2016 with my final child. And that was only because I had a goiter growing, and the way my primary care physician treated that, when I told her, “I’ve got this lump in my throat. I get food stuck in my throat” … she literally told me, “Mrs.Young, you’ve put on a lot of weight. This is probably fat deposits.”
Alicia: Yes, this is what her explanation was. I got lucky because her medical assistant … I used to work for the state of Georgia, and her medical assistant had a problem that I helped her with. And so her medical assistant was, like, “Listen, I’m just going to write you a referral.” And she did the same thing for my hip because my doctor was just, like, “Oh, you’ll be fine. You just need to lose some weight.” Even though I’m telling her that walking is becoming increasingly harder, and I don’t think it’s the weight.
Lauren: This is also something that you mentioned before we hit ‘record’, too, that with all of these varying symptoms that you had, the doctors kept saying, “It’s because you’re fat, it’s because you’re fat, it’s because you’re fat.” Or ignoring it ‘because you’re black, because you’re black, because you’re black.’ And it’s very interesting to me that you had to go through that process when there was never a thought about what the underlying symptoms were. Like, maybe I’m fat because of something else. And that it took that long to actually get the ball rolling.
Alicia: The first time I even knew that I had to see an endocrinologist, they took my history, and they were digging, and they were asking questions about my sleep, asking questions about depression, asking questions about weight gain/weight loss over the years. As I’m telling the endocrinologist this, she’s looking at me in disbelief and she’s, like, “Wait a minute, wait a minute, run that back …”
As I’m telling her, “Yeah, I got diagnosed with depression when I was 9. And I’ve been dealing with depression my entire life.”
Which is a common symptom of hypothyroidism. I go through flares of having really dry skin. I started losing hair in my eyelashes, in my eyebrows. I’ve told doctors this. Or even the fact that I’m extremely tired all the time. “Well, you have sleep apnea.” “Yeah, but I sleep with my C-pap. And I know my air quality is good. I know my seal is good, and all that stuff. My oxygen levels are good. So I don’t think that’s what that is.” There were so many red flags. But the biggest one to me was, I gained 100 pounds in six months and lost 100 pounds in six months — which I think we would all love to lose 100 pounds in six months, but that’s not normal. And I remember them just being, like, “Well, you know, we tested you for diabetes. You don’t have it.”
Lauren: It’s not the answer then. So then test for something else.
Alicia: They were so happy that I had lost it that it was good enough for them. Like, “Well now you’ve reduced your risk of high blood pressure … “ and this and that. But I’m, like, “But this doesn’t feel right.”
Lauren: If you lose 100 pounds in six months, that’s not okay. That’s not a good way to lose weight.
Alicia: It’s not normal. All of these things are going on, and I was having inflammation in my joints, too. But they always attributed that to my weight. I didn’t realize that hypothyroidism comes with its own form of arthritis. So, all these things were going on and it took till now I have to have my thyroid removed — because now it’s so large that it’s cutting off my air flow. And now I have to have hip replacement, because I didn’t even know I had hip dysplasia — which is what caused my arthritis. In all these delays, nobody ever looked. I’d go to the doctor and they ask questions, you give them answers. And it’s, like, “Okay, hmm mm.”
Lauren: Not to mention the fact that you also developed Asherman’s syndrome (AS) as a result of all of the scar tissue from the C-sections that you didn’t need to have.
Alicia: Yes! No one’s looking at this picture as a whole; they’re treating everything separately. And that’s the most frustrating thing. You have a cardiologist, you have an endocrinologist, you have a primary caregiver.
Lauren: And you’re having changes of insurance in the midst of it.
Alicia: But no one’s talking to each other. I think the best thing that ever worked for me was being in Kaiser’s healthcare system. I got really lucky with the doctors that I had while I was at Kaiser, but they also read my charts before they made decisions. So when things would happen, they would be, like, “Okay, well, let me look at your chart. You were just here.” And they could see blood work, and they would take those things into account and they didn’t make decisions without talking to each other. So I was really grateful for that. Between my OB/GYN and my endocrinologist, and my primary care, they would always talk to each other. Like, “We just had Ms. Young here for this and for that. Let’s compare notes.”
Lauren: Do you think that’s one of the benefits of going to doctors within one healthcare system? Whether it’s Kaiser or Yale … if all your doctors are under one roof, there’s more of a possibility they’ll discuss things?
Alicia: If they have access to that system. I have Blue Cross now. Emory and DeKalb hospitals, they merged down here in Georgia. So now everything is housed under one thing, so now everybody has access.
It’s getting those doctors to pay attention, that’s the problem.
Lauren: Do you think it’s also an issue that the doctors are overworked, though? We know that doctors have 10 to 15 minutes with each patient when they get to see them. So, the fact that they’re expected to see so many patients in such short periods of time?
Alicia: Well, here’s my problem with that. Doctors are not required to see that many patients. They do it for money. So that’s the first thing.
Lauren: Clapping! I’m clapping over here!
Alicia: It’s the for-profit health care system. So if you think about the fact that we get penalized if we’re 15 to 20 minutes late, and we may not only get penalized, but we may get rescheduled. But how long does it take our doctor to actually arrive into the examination room? We see everybody else — the medical assistant takes your blood pressure, does this does that, draws your lab; or you may even get sent to the lab, you might even get your labs done there. Okay, now we’re going to send you down here. So you’ve done all these questionnaires with whomever has checked you in. You see your doctor for five to 10 minutes, tops; they poke you, they prod you, and then they’re just reading whatever the medical assistant wrote down or the nurse wrote down, and it’s like, “Okay, we’ll see you back here in such and such.” But I’m, like, “I’m trying to talk to you and you’re rushing me out for the next patient, because you are late coming into this appointment, but you’re going to get your money, aren’t you?” It’s not fair. I think that you need to see your patients, and let your patients talk. So that means, don’t try to create back-to-back appointments, leave a gap.
Lauren: Have you found doctors now … after going through all of this, and becoming more aware of your own medical history and understanding the nuances of your body, and getting a handle on your own medical chart. Have you now found a team that makes the time for you, and that actually listens and communicates?
Alicia: Here’s the unfortunate thing. I did through Kaiser. That was a beautiful thing. And it was probably my most fulfilling experience in the healthcare system. But what happened was, I ended up having to leave work for my hip. My insurance was through my job. I had a great job; I worked for the state. They did pay for my insurance up to six months after I was out of work. But then I had to come off of it. Now, I could have paid for it out-of-pocket through Cobra, but that’s really expensive. So we’re on my husband’s insurance.
Lauren: So you actually had to stop working because of your osteoarthritis. So you end up with this osteoarthritis diagnosis far later than you should have received it. This is something that, as you were mentioning, can be co-morbid with hypothyroidism. And you’ve had a hip replacement.
I have not had my hip replacement yet. I’m not allowed … because I’m fat!
Lauren: Are you for real?
Alicia: Yes. After they did my X-ray, the doctors were, like, “All right, so your hip is as bad as an 80-year-old woman’s.”
Lauren: And that’s an indication something’s wrong.
Alicia: They’re, like, “So, you need to have hip replacement. But you weigh too much.”
Lauren: So what do they want to do? Give you a gastric bypass?
Lauren: They’re requiring you to get a gastric sleeve in order to get a new hip?
Alicia: Yes. Here’s the thing. This is their argument … If they replace my hip at this weight, the wear-and-tear will be quicker than for someone who is of a smaller size. Which means I’ll need surgery again sooner. Coupled with the fact that I am young, or I’m considered young — I’m 35 — they usually give hip replacements to people who are older, who are like 50 to 60 years old. And by the time they need another hip replacement, they’ll be in their 70s or close to their deathbed. So the reality is, they probably won’t need that second surgery.
Lauren: It’s less of a drain on the system.
Alicia: There we go. So somebody like me at my age, I’ll be due to have one within 10 to 15 years, and they’ll have to do it. The hardware, or whatever they put into your body, will wear down faster with my weight. Also they’re concerned about healing time because of my size and my inability to do physical therapy. Never mind the fact that I exercise at least five times a week, and was very active before my hips started crashing on me. So no, I’m literally now in the process of a weight-loss surgery program.
Lauren: How do you feel about that?
Alicia: Very conflicted. Very conflicted. I’ve been very honest about my journey, through my blog and on my social media.
Lauren: You recently got to a place where you’re really good with being who you are, right? And now you’re being told it’s still not good enough.
Alicia: And I think the most painful thing to all of this is, people don’t understand how hard it is to lose weight with hypothyroidism.
Lauren: Thank you!
Alicia: I had to really learn a new way of doing things. Eating. And there are times, if your medication is not where it needs to be, your metabolism is going to be slowed down.
I could eat a cookie and it’ll be five pounds, and it’s not going anywhere.
Lauren: Yeah, I hear you.
Alicia: It’s been very hard because I’m not really for surgery.
Lauren: Because it seems an unnecessary additional surgery. And you have scar tissue issues, and it’s a lot of extra stuff, extra hoops you have to jump through.
Alicia: Well, I will say, I do like the team that I’m working with. Because I’m required by my insurance to do six supervised visits with a nutritionist. She’s been really considerate of my hypothyroidism. Even learning how to eat for that to help me lose weight along the way, she’s been really good with. She’s also not numbers-driven. That’s where she and my surgeon are kind of different. My surgeon’s, like “You need to be this BMI in order to be eligible for this program.” My nutritionist is just, like, “I need your body to feel good. I need what you are eating to make you feel good. I don’t want you to really be counting calories. What I want you to do is just think about how you’re eating.”
Lauren: She doesn’t want to give you an eating disorder as a result of this program.
Alicia: And I’ve had my struggles with eating disorders.
Lauren: Of course, because you’re a fat woman living in this world. How could you not?
Alicia: So she’s been really good with me and taking into consideration I’m a person with anxiety and depression. Now my surgeon, I like her, too, because one of the things when you are my size … full disclosure, I weigh about 450 pounds. It’s been fluctuating a lot within the last month or so because I got down to about 445, and then gained some and lost it.
Lauren: But also you’re tall. So it’s not like you’re like five foot two-and-a-half.
Alicia: I’m 5’ 8-and-a-half. At this size, the doctors are terrified of me dying. And that’s just statistics. That’s why they feel that way. So there is a lot of pressure when they talk to me.
But I will say when you are my size, they will typically push you to have the bypass.
The surgeon I met with, she said, “I want to know what surgery you want and why you want it, and how we can accommodate you.” I told her the only surgery I would agree to is the sleeve, because it’s the least invasive one. And it doesn’t require any re-routing of my plumbing. That’s what I like to call it. Because some of these surgeries like the duodenal switch, the gastric bypass — they have higher mortality rates, and they also have higher complication rates.
Lauren: And this is where people are literally dying to be thin.
Alicia: To be thin. I’m get needing to have to lose weight to get the hip replacement. They’re not gonna let me do it otherwise. But if we’re going to do it, I want to do it on my terms. And before I rush into even considering it, I needed to see if I could lose weight on my own. So far, I’ve been able to lose about 50 pounds on my own. Because what people don’t know is, I was at 490-something, probably last September. So getting the right thyroid medication was part of that.
Lauren: That’s the biggest part of it.
Alicia: And my God, I went through so much with an endocrinologist trying to get the proper drug. So when my surgeon looked at my history, she said, “Normally, we wouldn’t allow for this. But I think you’d be a good candidate.” Because with the sleeve, it’s still a lot of you having to control what you do. Whereas with bypass, you are literally dealing with something called malabsorption where you can’t gain weight, no matter what you eat.
Lauren: And you can’t get nourishment from the good stuff you’re eating either.
Alicia: To me the scary thing about that is, ‘I’ll lose the weight, but will I really be healthy?
Lauren: Thank you.
Alicia: So at least with the sleeve, it’s just making my stomach smaller, which will limit how hungry I get. When they do that, it cuts out something that secretes a hormone in your stomach that gives you hunger pains. So it limits people’s ability to snack and all that stuff. But that only lasts for about a year. So you have to do that work within a year to help yourself along the way.
Lauren: Because aren’t you also then at risk for basically starving yourself? Like, if you’re not feeling hunger pains, and you forget to eat because your body’s not telling you to eat?
Alicia: In the support group I’m in, the women and the men who have been there have said … and it affects everybody differently … but some people have to set alarms so that they can remember to eat. And the amount of food that you can eat with a sleeve is crazy. The best way to describe it is your stomach is about the size of a golf ball.
Lauren: So it’s like a few things. There’s not much you can do.
Alicia: Right, so you’re literally eating a spoonful of food at a time, and you can’t drink fluids and eat food simultaneously. There has to be space in between, because fluid takes up space.
Lauren: Already, this to me sounds like a disordered relationship with food that you’re being forced to develop — because of weight loss surgery in order to just get the hip you need. Where the medical system could also equally be like … cool, we’ll give you a hip now … we’ll give you another one in 15 years. But they’re not open to that.
Alicia: It’s not like this is free. I’m paying for it.
Lauren: Yeah, exactly.
Alicia: And I think what’s more painful is not only will I have to pay out-of-pocket … not out-of-pocket, but it’s still a good chunk because insurance is a scam and we all know that. I’ll have to pay for weight loss surgery and for a hip replacement. It’s two surgeries. So that’s why I’m trying to get the most weight off, because if I hit my peak weight before surgery comes, I’m going to go get my hip done before I ever get weight loss surgery.
Alicia: They told me my BMI has to be to a certain number to get hip replacement. I’m, like, if I hit that BMI, and I do it on my own before weight loss surgery, I’m probably gonna skip weight loss surgery. I won’t even lie. Now, if that doesn’t happen …
Lauren: I mean, at this point, it’s also like, you’re healthy. This is the frustrating thing about fat phobia, right, is that people think that because someone’s fat, they’re not healthy. You’ve literally just sat here and told us that you exercise five days a week. We know that you have a good relationship with food that’s only becoming more disordered the more you talk about weight loss surgery. And your body has already been through so much trauma, to have to put yourself in that position because of the way the world sees you, and how this has influenced the medical system and the inherent bias of the medical system.
Alicia: They don’t see it as a bias. One of the most astounding things I think I’ve listened to, was when they recently were talking about COVID and how it’s disproportionately affecting black communities. Even though they may have the smaller percentage of communities because of all these underlying health risks, these co-morbidities — diabetes, high blood pressure.
Lauren: What about medical neglect?
But you can’t have these conversations if we don’t talk about the social and economic disparities that occur in our communities.
So if we don’t make as much money as a person who’s white …
Lauren: If you live in a food desert and you can’t buy organic vegetables.
Alicia: Can I just tell you … going into the grocery store in an urban area, versus going into a suburban area, is the wildest thing sometimes. Because I’m not bougie in my taste. I love sushi. I like poke bowls. I don’t want to eat chitlins! When I go into the Kroger’s in my area … and where I live is considered suburban; it’s predominantly black, but it’s not like the hood. It’s not the ghetto. But if I drive up the street to go to the grocery store, because it’s in a predominantly black area, the things that are accessible in those stores are totally different than if we go over to the side of town that’s been gentrified. There’s a Kroger’s that I used to go to by my old job; it had a bar, and it had all this fancy schmancy stuff, and I’m, like, I can’t even go into my Kroger’s and get crab salad. I’d have to drive 30 minutes away to go get that in the suburban area. So when I hear them talk about … well, yeah, that’s why black people have diabetes, I’m, like, yeah, because you guys are shoveling Kool-Aid on our shelves, hiking the prices up on the things that are actually healthy, and making ramen noodles available. So when you’re a person who has multiple children, or even just yourself, but you don’t have the funds, you’re gonna shop to eat what you can afford. There are people who are out here who are, like, “Well, you can budget and be healthy.” I will never deny the privilege that I have coming from a two-income household. My husband and I have two incomes. I recognize that we have a privilege in that sense.
Lauren: But you’re also raising three kids.
Alicia: Right. And even with that, we’ve been able to manage that, but some days, it’s really tough. So imagine not having that, you know what I mean? And how much harder that is.
So when people are casting all these judgments, and they’re, like, “Well, you know, black people are more obese because of how you eat.” If they even knew the history of how some of these delicacies came into place in the black communities, and where it stems from.
Alicia: And there is such a gap, which is why you see such differences. So when they talk about health and co-morbidities and things like that, you have to acknowledge discriminatory practices in health care.
Lauren: And that these trickle down to where we’re getting our food from, where we’re living, what the conditions are like where we’re living, our school system. Everything is affected.
Alicia: One of the things my doctors said, when I first found out I had Hashimoto’s, was to join a support group — because there will be other people who understand.
Lauren: So wait a minute, you got a diagnosis and you were offered a support group? I didn’t get that!
Alicia: Oh, yeah. My endocrinologist was really cool about this.
Because I didn’t realize that there was so much stigma with Hashimoto’s, that it wasn’t really viewed as a real disease.
Because you can have Hashimoto’s and have a normal thyroid lab, but still have symptoms.
Lauren: Yes, thank you! And that’s how medical gaslighting happens.
Alicia: And there we go. So, there are communities on Facebook, but I’m usually the only person of color in these groups. And the reason that is, is because they don’t typically test us for this.
Lauren: I was gonna say, it’s not because there’s less of a prevalence of Hashimoto’s in the black community, it’s just because no one else is being offered the test.
Alicia: But let me tell you … when I started sharing my journey through all this on Instagram, and on my blog, suddenly other black women were coming forward, and they’re, like, “Wait a minute, you just said something that seems really interesting. Because I’ve been going through this.” They would go, and they would come back and say, “Oh, my God, I got tested. And they told me I have hypothyroidism.” Or, “Oh, my goodness, I just found out I have Graves disease.” When I tell you, the lack of knowledge, the lack of research, the lack of testing — because they don’t think we suffer from these things. So I always wonder … we get these numbers and they talk about statistics where it’s more white women who are going to deal with Hashimoto’s … is that really the case? Or are you not testing?
Lauren: That’s exactly it. It’s the lack of testing, absolutely. I mean, it’s interesting too, because you also mentioned before we hit ‘record’, again, there was a lot of stuff we talked about … but even the sleep apnea thing. You have sleep apnea in your family, and we know that it’s a throat issue. If you have obstructive sleep apnea, it’s a throat issue, right. And that that’s one that can be genetic, because we were talking about how my mom has the same thing I have, your mom has the same thing. And your siblings have, and also your grandmother had and your uncle had. And yet, your grandmother, your uncle, they were never tested, and they died younger because of it. But they ended up having … whether it was a heart disease or an underlying condition that very possibly could have been caused by sleep apnea that was left untreated for their entire lifetime.
Alicia: Absolutely. My mom had never been tested for it. No one in my family got tested for sleep apnea until I did. And once I did, then I realized, oh, holy snap, I hear my mom sleeping. I can hear her snoring.
I hear her stopping her breath in her sleep. I was, like, “Mom, you need to go.”
Same thing with my sister. I’m, like, “I can hear you gasping for air, you need to go.”
Lauren: And it’s a gift when you know you have the diagnosis, because now you can also keep an eye on your kids.
Alicia: And there we go. After I got my thyroid diagnosis, I got thyroid eyes! It’s automatic. I look at people’s necks when I’m talking to them. It’s crazy, but it’s been helpful — because my sister found out she has a goiter. I was literally talking to her and I’m looking at her and I’m, like, “A, A, you need to go get that check.” She’s flagging me ‘no’; turns out she’s got a thyroid issue. My other sister, who doesn’t live in Georgia, she called me randomly shortly after everything I had gone through and said she was having heart palpitations and stuff like that. And I’m, like, “Do you feel like anything’s in your throat?” She said, yeah. I’m, like, “Sounds like you might have hyperthyroidism, not hypo. Go get that checked.” She had it, she has Graves disease. So I’m, like, we often don’t know, because we’re not being told.
Lauren: And then this all cycles back into the communities that people are living in, right, and environmental factors that are contributing to autoimmune disease. Whatever food is available to us; whatever homes we’re living in, whether they’re new builds or old builds, whether there’s mold exposure. We don’t know exactly what causes autoimmune disease, but we do certainly know that there are environmental factors at play. And if you’re living in a disadvantaged environment, you may have a higher risk of these things — which are then not being tested for.
Alicia: I think the interesting thing is, my mom has several different autoimmune diseases. The first thing I learned is that if you have one, you’re prone to having multiple. She got diagnosed … I cannot remember the name, something In the scalp …
It’s where the hair follicles, they die. They scab on a blister, and it creates necrosis and it scars over and the hair doesn’t grow anymore. She got diagnosed young. They’ve been testing her for lupus for years. She has never tested positive, but my aunt did. And I found out recently that they came out with a marker. They have to keep an eye on it. I just have to be tested regularly. One of the things I think is, sometimes not knowing your family history is really tough.
Lauren: Such a good point. Know your family history and ask if it’s not being discussed.
Alicia: So my mom’s dad, she didn’t know much about him because when her parents divorced, his family wouldn’t release medical records to my mom and her sister. He died of some form of cancer. They don’t even know what kind of cancer, because they won’t tell. So she’s got all this history that’s unknown.
So for me, I’m very in tune with my parents; I’m all over my parents!
Lauren: Because you’ve learned!
Alicia: Yeah, and my dad is trying to tell me things that he’s aware of, but then he’s just, like, “You know, they don’t really talk about this stuff in my family.” The family members that I am in contact with on my dad’s side … I found out he’s got family thyroid diseases prevalent over there. I wouldn’t have known that, had I not found out I had a cousin … they both had thyroidectomies. There’s so much that goes into this. And knowing your family history is a really, really big one. And even knowing what you’re predisposed to, because of ethnicity. My mom and my dad are both mixed. So there’s other things at play in knowing what I’m predisposed to. In some cases doctors are just, like, “Well, this doesn’t typically happen to people of color.” I’m a person of color, but my mom is this and my dad is that — and you wouldn’t know it just by looking at me, but you can’t just assume I won’t have this.
Lauren: Just because you present as a black woman doesn’t mean that’s all you are.
Alicia: Right. And I can’t assume that this person is only white. You could be Jewish, which can put you at a predisposition for Tay-Sachs. You can’t just know by looking at somebody, and I think these doctors get really lazy.
Lauren: I think also what happens is that there is an element of racial bias that then comes into it. Even with … if you’re black, you’re predisposed to this … if you’re Jewish, you’re predisposed to that. It’s like these become the weaker links, the weaker races. And that’s where will you see ethnic cleansing in other parts of the world.
Alicia: It’s amazing, but it’s true. It’s absolutely true. I have conversations with people all the time, and I’m just, like, “You don’t even realize how ingrained this stuff is, systemically.”
That’s what makes it so hard, I think sometimes, why people buck back against the whole conversation of racial disparity …
“No, Kumbaya, we’ve had a black president!” And I’m, like …
Lauren: No, but racism still exists, everyone.
Alicia: That does not change the system. And I’m not even saying it’s your fault. You know, you weren’t here when this was being ingrained into the system.
Lauren: But it is your fault if you’re not doing something about it right now.
Alicia: It is your fault if you refuse to acknowledge it. Or you dismiss it, or it’s so normalized that you don’t see the problem with it. I remember being a teenager and doing a little experiment when we were job hunting, myself and my friends. And I had a pretty ambiguous name; my maiden name was Alicia Flowers. And I’ve had friends who had names that are considered more ethnic than mine. So we would play games on our applications to see what would happen, like who would get the call back. I would put down that my race was white, or my friend would change her name from something that sounded really ethnic. We changed to something really basic, like Jane. This was us as teenagers figuring out that if my homeboy’s name is Rahim, he more than likely is not going to get this call back — versus my guy friend named Mark. That was just reality. And we learned that so early. And I’m, like, if this happens in employment, why wouldn’t it happen in healthcare?
Lauren: It happens across the board. Absolutely.
Alicia: You pick up a chart and the first thing you see is this person’s name, and you’re prepared to have this conversation about diabetes and blood pressure? I promise you are. And I think what blows my mind is that immediately doctors are, like, “Well, you’re not supposed to eat this.” I was talking to the doctor the other day, and they’re just, like, “Have you cut down your soda?” I’m, like, I haven’t drunk soda in a decade. I don’t even drink juice.”
Lauren: Just because you look at me and you see a fat woman doesn’t mean that I’m lazy.
Alicia: They just assume this. The worst thing is, my mom was talking to her therapist, and she was explaining to him how she was worried about my health issues and how things were kind of making her feel concerned. The doctor’s asking her questions, “So what’s going on with your daughter?” And she’s telling him, “Oh, you know, she got her Rollator, and she’s doing really well.” And he’s, like, “She walks?” And my mom’s, like, “She walks, she exercises.” And her doctor was floored. Was just floored. He said, “Really? Your daughter is over 400 pounds and she does these things?”
Lauren: Because you can, because you’re actually fitter than everyone presumes!
Alicia: My 600-Lb. Life ruined it for everybody!
Lauren: Yeah, absolutely. But this is the other thing … you have mobility aids, but you don’t use them all the time. And you have them for when you’re having bad flares with your pain. This is a whole other aspect of that chronic illness life, isn’t it, when you have to get okay with using mobility aids. Because that’s a hard thing to do when you’re a young person and you’re, like, my body should be working normally.
Alicia: I have to use my Rollator. There’s just no getting around that. I’m able to stand for smaller periods of time. If I’m walking the short distance, I can use a cane. But people don’t tell you canes are horrible for your gait, and they don’t help your joint problems.
Lauren: Yeah, because it unevenly distributes weight.
Alicia: Right. So if you see me with a cane, it’s because I’m briefly doing something. There are times I’m able to stand for a little bit longer without it.
But I suffered a while with my pain because I was too hard-headed, and really that stemmed from ‘I can’t be the fat person with the mobility aid.’
Lauren: Well, isn’t that also … okay, now I’m going to punish myself for being fat. Now I will play into what I’m being told from the outside about my appearance.
Alicia: I remember being pregnant, and my husband’s, like, “Alicia, get in the Mart Cart.” And I’m, like, “No, I’m not getting in the Mart Cart.” I’m eight months pregnant. It’s okay if I’m in the Mart Cart. Who cares! Even if I wasn’t eight months pregnant. But in my mind, I’m, like, I am going to suffer through this because I refuse to be pointed at and laughed at by anybody who’s going to tell me my weight is my problem. And even after I gave birth, it would be so hard. I would be walking through Walmart and would have to go sit in the pharmacy department because there’s a bench over there — and cry because I was in so much pain. They told me I needed a cane. I didn’t get a cane for another nine months after they told me I needed a cane. They told me I needed to get a handicap placard for my car. It took me a year before I actually went in.
Lauren: What about using that handicap placard? Have you ever experienced any judgment for using it?
Alicia: Yes, only because people can’t tell right away what the issue is.
Lauren: And you’re relatively young.
Alicia: My Rollator is usually in the trunk of my van. So if they see me getting out of the car, they’re just kind of, like, do you need this, or whatever. And it’s not until they see the Rollator that you see the look of … Oh … But then there’s always also this look of … Oh, I wonder what’s wrong with her, and why … People stare.
Lauren: And also, here you are … you’re a fat woman. Are they looking at you and going, like, Oh, that must be her fault?
Alicia: Yes. There have been times I have gotten in the Mart Cart, and people have shaken their head at me, like … shame on you.
Lauren: I’m literally shaking my head at those people shaking their heads!
Alicia: I have seen it. I would say I probably have tougher skin than a lot of people because that’s just who I am.
Lauren: You don’t grow up in New Haven for nothing!
Alicia: (laughs) Yes! I think I’ve got a little bit tougher skin than some people! But I think because I experienced bullying at such a young age, I had no choice but to learn how to toughen up.
And I also knew I wasn’t going to get a fair shake in life — I knew that, being a person of color, being a woman, and being a person of size.
I just knew that the cards were stacked against me. So I’m more surprised, honestly, when people actually ask questions. Now, I’ve had that. And I would prefer you to ask — even though it’s none of your business — than I would for you to assume. So when people are, like, “You’re so young. Why do you need that?”, and I share with them … a lot of people are shocked. Or, I will hear from people who will tell me, “I have the same pain as you. But I don’t want to say anything.” And I’m just, like, “There’s a million of us out here suffering, and we will literally suffer to avoid the stigma.”
Lauren: Yeah, absolutely. Now, through all of this journey that you’ve been telling us about, it sounds like you’ve become your own advocate. You have learned to be that. You had no choice in the matter. But interestingly, your son may have different choices than you do. You have a special needs son.
Alicia: I do.
Lauren: Can you talk to us a little bit about what it’s like being a mom of a kid who’s living with different chronic illnesses? And how that manifests in terms of advocacy for you, too?
Alicia: So it’s been a wild ride. Part of the problem with having a child who has special needs is, he’s not the problem. It’s everything else. It’s the system.
Lauren: He’s not the problem, he’s just a kid!
Alicia: He’s just a kid. When we lived in Philly, they were homeschooled. So although they went to a house with other children, it was a very small environment. Moving down here, it was brick and mortar and their first experience. He was in first grade when we first moved down here. There were things that I noticed about him very early on. He’s always been super messy and super chaotic, and his desk would be a mess. I would be so upset and be, like, “How can you function in this?” But on the flip side of that, my son was an honorable student. He won awards for being the best reader in the state for his grade. His lexicon level has always been far more advanced than his age. He was very savant-like with certain things. And I was just, like, well, you know, I was a pretty smart kid. I’m gonna take credit for that. Like, yeah, he’s brilliant!
Lauren: I was going to say, no kid of yours … He’s yours, he’s smart! A lot of this happens by osmosis and genetics.
Alicia: His dad would argue! (laughs)
Lauren: You can just say that’s from his side!
Alicia: I noticed though, when he was in first grade, that he was very hyperactive.
Now, I wasn’t quick to label him because I already know what happens when they label little black boys with anything.
So by the time he was in second grade …
Lauren: I’m very glad you say that. I just want to point that out. As a mom, you saying that is like an additional awareness that parents of color have — especially if they have sons. Being aware of the way in which their kids are going to be judged by the world when they get out there.
Alicia: Yeah. He was going to just a regular district school, but by the time he was going into second grade, what I loved was that his teacher said, “You’ve got to get him out of here. You got to get him into a better school. There’s a program with a lottery where you can apply to put him somewhere else. He does not belong here. He’s too smart. He needs to be molded.” So we applied, and he got into a different school. And it worked well. Except when he was in third grade, when his tics started. By third grade, we had had an assessment evaluation for the first time, and we realized he had ADHD. And that’s okay, not the end of the world. We had to learn a different way of managing him. We fought to get a 504 put in place for him, which protects his rights, gives him a little bit more time if he needs it. He needs a lot of re-direction. As he’s gotten older, it’s definitely gotten better. But that was the start of the tics. It started with whistling. He would whistle like crazy, and at first, it wasn’t clicking for me that he couldn’t control it. So we would be, like, “Oh my God, stop.” And then I started realizing because he started something — he made a noise. And it gave me pause, because it was a noise I used to make as a kid. Fast forward, my therapist told me, “You probably had an undiagnosed tic disorder and you didn’t even know it as a kid. It’s awfully common in children who have anxiety.”
Lauren: But this is something that you don’t have now as an adult?
Alicia: No. I’m very anxious, I will say. It is not like my son’s. And the crazy thing is, my mom was, like, “We didn’t know what it was. We just thought you were being the annoying little sister.” And they would just tell me to be quiet. My siblings would make fun of me anyway. But fast forward, it’s what made me stop and say, wait a minute, that sounds familiar. So I just observed him. And I said something to my husband. And at first my husband was really apprehensive — again, for the same reasons … I don’t want to label him, I don’t want him to be the black kid with the problems. But then the whistling turned into something else. And then we started seeing this succession of noises, and I started paying attention more. He used to do this thing with his hands, which he had been doing forever. And then he would grimace. So I started doing some research, and realized that with ticking, you can have motor tics — movements of the body. But also verbal tics, and it usually will go hand-in-hand. And so when I read that it was like the grimacing of the face, or sometimes the movement of the fingers, and that around 8 or 9 is when you’ll start to see it really manifest in boys, and it will get worse before it gets better. It was like he was textbook. So I went to his pediatrician and I said, “Listen, I want him evaluated and assessed for this.” And they were more surprised by how much knowledge I had on it.
But I knew to come with my ducks in a row, because I already knew that I was gonna be the hysterical mom who is dismissed.
Lo and behold, he had it. And we talked about it.
Lauren: And he had it, as in Tourette Syndrome.
Alicia: Tourette syndrome. Yes. Which is not common in African-American children, so they say.
Lauren: Because it doesn’t get tested for!
Alicia: There we go. It gets labeled as something else. So one of the things we did … we tried medication briefly with ADHD. It didn’t work.
Lauren: That’s a tough one too, because ADHD, you don’t know whether it’s something that will change as they get older.
Alicia: Well, here’s the trick to that. The drug that they were giving him for the ADHD helped control his tics for a short while. And then it made him worse. Because the medication they give ADHD children are stimulants.
Lauren: Right. And if he’s already dealing with potential anxiety …
Alicia: Right, so we decided to take him off the medication. He hasn’t been medicated since probably third or fourth grade.
Lauren: And how old is he now?
Alicia: He’s 11. He’ll be 12 in July. So, what ended up happening was, we were in the fight for our life with the school system. Because part of the problem is he was in a gifted school. He was in a school for gifted children, he was in all gifted classes. They were not used to a child like him. He was the only one like him in his class.
Lauren: In a sense that he was high-functioning, but he had …
Alicia: He was high-functioning, but he had the tics and the noises. So the kids would give him trouble for it. They didn’t like it. To the point where we had to meet several times with the administrative staff. And we were, like, “He has a 504 in place. We’re going to enforce this. You guys have to adhere to it. I’m sorry if it makes you uncomfortable or if it’s troublesome for you, but this is what it is for him.” So there was a lot of back and forth, because they wanted to give him an IEP, but he wasn’t eligible for one because he’s not special ed. He’s able to do the work, he’s able to keep up. You have to create an environment for him, though, in which he can thrive. And the idea of them having to accommodate one kid versus the other 18, it was skipping their mind. But the best thing that happened was that the school psychiatrist had the teachers come into a roundtable session.
She gave everybody a piece of paper and a pencil, and she said, “I want you guys to write down the words to the Pledge of Allegiance. But every third word, I want you to put your pencil down and I want you to clap, snap, pick your pencil up, and pick up where you left off. For one minute straight.”
Lauren: This is an amazing school psychiatrist, psychologist.
Alicia: She said, “Put the pencil down, snap, clap, pick your pencil back up and keep going.” Not one adult at that table was able to do that within a minute.
Lauren: It’s an amazing lesson.
Alicia: And she said, “This is what it’s like for him, getting instruction from you guys. That’s what it’s like for him. That’s what it’s like for him to keep his focus.” So in that moment, I could see the lights clicking on for his teachers; it was like, okay. So things kind of calmed down towards the end of the school year. It was a really rough school year, his last year at this school, because he was in fifth grade last year, and it was really tough. So we had to make a decision about where to send him to school this time, and I was just, like, “I don’t want to do this again.” So we found a school that was fairly new, and it teaches atypical children and neurotypical children together. So no special ed; it is literally a school of 260 kids from sixth grade to 12th grade, and they don’t separate them. There’s not a special ed class. There’s a general education teacher and a special education teacher, and they teach together. What it does is it creates a community where children who have different needs are acclimated to children who don’t. And the children who don’t have special needs, they then learn how to interact with children who do have special needs and who are different. And it creates a sense of community.
Lauren: And empathy from both sides.
Alicia: Yes, it absolutely does. And one of the things that I thought about when we were applying … there was only one sixth grade seat open. And it was a lottery.
Lauren: And it’s yours! (laughs)
Alicia: And we got it! I bawled my eyes out when this happened, because I was at my wit’s end and, I was, like, I can’t go to another school, fighting with these teachers and stuff like that. So he’s there now, and to see him thrive and flourish and have his community. He has a community and he didn’t have that before at his previous school,
Lauren: And he’s gonna have that community all the way until he graduates high school.
Alicia: Till he graduates high school. It was like a godsend. It was amazing. It is freakin’ fantastic — because to see him thrive.
The thing I do love most about my son is he has resiliency that I wish I could bottle and sell.
He’s such an emotional kid, he’s really empathetic. He’s like a gentle giant. My son’s super tall; he’s a big kid. And he’s just the sweetest though. When you’re on a spectrum, a lot of times you do have touch and sensory disorder and things like that. So we do go through that. But even with those things, he still likes affection in his own way. So to see him just coming into his own and getting a little bit more comfortable. Now the tics, we’re so used to them that we don’t even notice them unless other people are noticing them.
Lauren: And your other kids too, obviously. It sounds like at home, this is how life is.
Alicia: This is how it is. My daughter will be 17 in May, and she’s very protective over him. They’ll fight like cats and dogs, but she does not allow for anybody to get after her brother. In that sense, she’s really revved up, like “No.” And then the littlest one — he’s 3 going on 4 — he just follows my son around. He just has to be near his brother. They share a room. But he doesn’t even notice the tics. And I laugh, because I see him sometimes imitating him, like if he’s whistling, he’ll do it.
Lauren: Oh, that’s very cute.
Alicia: But it’s not even a thing for him. And I love that he has that.
Lauren: Because at home it’s an integrated environment.
Alicia: Yeah, it is an integrated environment. I probably worry more than he does.
Lauren: Sure. And this is what it’s like to be a mom, but to also be an advocate. And have gone through what you’ve gone through, and have a son who you’re going to have to be looking out for as well.
Alicia: But I want him to know how to advocate for himself, too. So we talk a lot. He’s not the most communicative kid, unless he’s talking about something he wants to. So when you ask questions, you have to be really specific. You can’t say, “How was your day at school?” Because he’ll just say, “Great!” You have to be, like, “So how was math class? How was ELA? How were your interactions at physical education? Did anything happen today that made you emotionally feel different? You have to be really specific, because he won’t just come out and say those things.
Lauren: That’s also boys of a certain age. So in that sense, its quite typical.
Alicia: And girls, too.
Lauren: Yes, and girls. At certain ages, they’re going to be less responsive because they’re sort of feeling their way through. So that’s all very much to be expected.
Alicia: We got the opportunity to watch a documentary on HBO together. I can’t remember the name of it. But it was about children who had Tourette syndrome. And I asked him, “Do you want to watch this?” And he’s, like, “Yeah.” We watched it together, and for the first time ever, I saw an emotional reaction out of him in terms of having tears when he watched it — because it was relatable for him. In that moment, I just wanted to hug him and hold him — and I’m going to cry now!
Because he’s such a resilient kid that sometimes I forget: this is his reality. This is what he goes through.
This is what this feels like to him. And we don’t know where this is going to take us. His tics could calm down. It happens. Sometimes they don’t, and they carry into adulthood. We don’t know which way it’s going.
Lauren: But good for you for being a mom who’s been stickin’ up for him. I mean, it’s interesting because you’ve been burned by the system that’s now supporting your son in some ways. And I think to come to terms with that, to be okay with where you’re at, and to be able to use the system to its advantages for your son …
Alicia: Yes, because the system does have advantages. If you have the know-how. And that’s part of the problem. So many people that I’ve talked to …
Lauren: Well, there’s no education.
Alicia: There’s no education about it. There’s no class in school. Not even in college.
Lauren: Why there is not a college class on filling out your tax return, or filling out an application for insurance and things like that. Because these are basic life skills in this country that are so complicated,
Alicia: Right! It’s basic things. When my mom goes to the doctor now … I’m forever checking in with my mom … I’m, like, “When you go, you need to ask these questions, you need to demand these things.”
Lauren: So now you’re the advocate for everyone around you!
Alicia: Right. And like I said, my mom is super non-confrontational, and I’m, like, “Do I need to come to your appointment with you — because I will.”
Lauren: I just want you to come to my doctors’ appointments with me to hang out with me in the waiting room!
Alicia: Oh, yeah! I’ll be in there asking all the questions!
Lauren: Especially because we both have Hashimoto’s, so we can sit and be, like, “So talk to us!”
Alicia: Because, you know…
Doctors really hate it when you tell them you’ve been Googling stuff, right?
Lauren: Yeah, but the best is when they Google stuff in front of you!
Alicia: All right, thank you. I’m glad that you know that because I’m, like, whatever software you’re using is literally the medical version of Google. It’s literally guesswork when you’re putting together symptoms, and you’re putting it into a system. And you’re deciding based upon your education, and what you’re reading on the screen, what this person may potentially have.
Lauren: But it behooves us as patients as well to know that … a doctor comes in and their job is to get to the bottom of it, right? Their job is to figure out the answer. But sometimes figuring out the answer requires a little digging and a little research, and it’s not the worst thing to see people Google things in front of you, if they’re doing it for the right reasons.
Alicia: Well, I just go to the doctor’s now with my diagnosis. And I know that sounds really wild, and I know this is why my doctors can’t stand me, but …
Lauren: You’re an empowered patient.
Alicia: Before my endocrinologist, I had to go have an ultrasound and all that stuff. I Googled ‘goiter’ to find out what it was. Because that’s what I thought I had, and I told my doctor, “I think this is what I have. And I think I need to be tested for Hashimoto’s.” They don’t even test for Hashimoto’s. And I’m, like, “I need to have my CPO-antibodies checked.” And she looked at me, and she’s, like, “Where did you read that?”
Lauren: Good for you! I didn’t know that. It took me going to several doctors to have a doctor teach me.
Alicia: Well, that’s where those Facebook groups came in handy, because there was so much discussion. And even when I just got my new endocrinologist, coming over to Blue Cross, there was this huge argument over not taking levothyroxine. Because when I first had that, it put me in stroke territory, and I don’t want that. So then she just had me try Synthroid; it did the same thing. I’m now on tyrosine which is doing wonderful so far.
Lauren: Is that like a natural desiccated thyroid?
Alicia: No it is not. My doctor will not prescribe that because she said it’s not regulated and they don’t know …
Lauren: Yeah, some doctors have problems with compounding pharmacies.
Alicia: Yeah, so what she said was, tyrosine… if you are a person who has an autoimmune disease, you really have to be mindful about the fillers in your drug — not just the drug, the fillers. Tyrosine has very few fillers in it. Part of that problem, though is, it’s not authorized by a lot of insurances. My insurance didn’t cover Synthroid, which is the name brand of levothyroxine. So I had to get an approval for that. It didn’t work anyway. So she put me on tyrosine, and we had to go through the process of getting that approved, because she had to tell them, “She’s allergic to this other stuff, and if you give her anything else, it’s going to kill her.” But tyrosine and the good drugs … the insurance companies don’t cover it because they’re expensive.
Lauren: Too expensive for the insurance companies, who are making all this money off of us as it is.
Alicia: I got mine. And with insurance, it costs me $50 per prescription.
Lauren: It’s not cheap!
Alicia: No. And without insurance, it would have been almost $200.
Lauren: And imagine how that adds up over the year.
Alicia: First of all, it’s a gel capsule. I’ve never seen that for thyroid meds before.
Lauren: Nor have I. That’s because there’s less fillers.
Alicia: I was going to say, I wonder if that’s why. and it absorbs differently. Because, you know, gel capsules dissolve fairly quickly.
Lauren: I’ve never heard of this medication. I can’t wait to ask my endo about it.
Alicia: I’d never heard of it either. And she’s just, like, “You’re going to take two pills a day.”
The other thing is, they did not talk to me about how your weight does affect the amount of medication you need.
So there was a whole conversation about that, and I finally asked somebody, “Perhaps you guys aren’t prescribing me the right dosage — this might be a problem?” So just learning certain nuances and things to ask now … I know they get frustrated with me. I know they’re, like, “Ma’am, stay off of Google.” But I’m, like, if I don’t do this, you guys will drop the ball.
Lauren: None of your doctors have been happy that you’ve come to them with answers?
Alicia: No. Okay. So the doctor I have now is awesome. They’re just, like, “Oh, we love that you come in here and say, ‘This is what’s going on.’” But some doctors, no, they don’t like it. I’ve found that more with my endocrinologist … and I’ve had a few now because I fire my doctors very regularly, I won’t lie. They don’t like that because they feel like you’re telling them how to do their job. So when I told them, “You should be testing more than just T4, you need to be testing my T3 as well.” “Well, that doesn’t really affect it.”
Lauren: Yes, it does!
Alicia: And I also need you to check my selenium, and to check my vitamin D — because these things can be forms of deficiencies for people with thyroid disease. Some doctors don’t like that. My therapist, she loves it; she’s, like, “You come in here and you’re very interesting, because you diagnose yourself!” (laughs) I’m considered a high-functioning depressed person. I told my doctor, I’ve been dealing with it for so long that I learned to mimic normal behavior as a kid. Just because I knew if I didn’t, it was going to strike people as my being odd, and I told her, I had to learn to adapt to my environment. I don’t know that that’s necessarily a healthy thing, but it’s helped me be able to function. So, talking to a therapist, I’ve learned a lot more about myself, and I think my experience is what has caused me to have to be this way. If I depend on anybody else to advocate for me, they’re not gonna do it.
Lauren: But it’s great that you are also mentioning the mental health aspect of this, too. Because these are physical disorders that we’re going through, but if you’re not also taking care of the mental health side of things, and being okay with who you are and who these chronic illnesses make you become, for better or for worse, then you’re kind of lost. And the fact that you’re actively going to a therapist … And like you mentioned, your mom has a therapist, too. It sounds like your family’s very open to mental health.
Alicia: It wasn’t always that way. I really attribute that to my mom; my mom, when I was very young, she sent us to therapists. I didn’t take my therapy or any of those things seriously until I was well into my adulthood. Because at the time I was really, like, I don’t need to talk to anybody about my feelings, But my mom really pioneered that for us.
I think I was about 20 or so when I really started realizing I’m really struggling with my mental health.
It was rough, because after I had my daughter, I went through really bad postpartum and didn’t even know that’s what I was going through. And my first experience with any type of anti-depressant, I was probably like 20 to 21. And it’s been a journey.
Lauren: Same! I think that’s a good time, too, because your hormones are starting to settle a little more after the teenage years.
Alicia: You’re not a kid anymore, right. I’ve had to be very vocal about mental health. And making that choice, I knew it was a possibility that people would look at me like … you’re sharing so much, you’re crazy. But if I don’t share … I could be saving somebody’s life.
Lauren: And the number of people who’ve come out of the woodwork, and said to you, “I have that story, too.” That shows why it’s worth it.
Alicia: Yes! You need to normalize the conversation around mental health, because it’s just not adequate enough. I was hospitalized before, and when I share that with people … people make jokes about the crazy house, and I’m, like, “Yeah, but I’ve been there.” I’ve been in the psych ward. I’ve gone through that process. It’s very humbling. But if I hadn’t done it, I don’t know what would have happened to me. When I know how close to the edge I was teetering … when I think about other people … sometimes when you’re depressed or you’re dealing with anxiety or mental health, it manifests in really bad ways. Including your health. And people discount the connection between your body and your mind. But if your mind’s not right, it will take a toll on your body. Even if you are, say, predisposed to autoimmune disease, mental health can exacerbate that. And it’s like a vicious cycle, because physical health can exacerbate the mental health. So you’ve got to take care of all of it.
Lauren: Yeah, I’m so glad you’re saying that. I want everyone who’s listening to keep that in mind. This is a whole body system. And that includes your mind, which influences your emotions. And it’s so important to take this lesson from someone like Alicia who’s been through it; take it from me who’s been through it. Take care of all of those aspects of your health. And don’t be afraid to advocate for yourself, because that’s exactly what you’re teaching us to do by continuing to be yourself and just shedding a light on it.
Alicia: Being a parent forces me to have to do that. My daughter, she’s going on 17, but she has been diagnosed with depression. And I always tell her, I will never go into her business — because I want her to find her voice, and be able to use it and open up when she’s ready. But it’s been a journey since she was about 12 or 13; she’ll be 17 this year and it’s still an ongoing battle.
And I think what broke my heart the most was, I felt like, is this something I gave her?
Lauren: I wonder about that. I haven’t had kids and I’m, like, do I want to? I wonder because I don’t want them to go through what I’ve been through. But at the same token …
Alicia: Even though her biological father is not the person I’m married to, my husband’s been in her life since she was 2. We work really hard to create this environment for our children. And I had all these ideas about how we wanted our family to be. I wanted to be open, and I want them to be able to talk to us. I want to give them experiences; I want to do things where they always feel nurtured and loved and cared for. And despite those things, she still manifested with depression. It felt like such a failing to me. I understand it’s really not, we’re imperfect. You cannot help sometimes what your genetic makeup is.
Lauren: Or what your environment produces. You just don’t know.
Alicia: You don’t know. So having her and going through that experience, it was almost like re-living it again. But I’m very grateful that I had my own experience, because I was able to spot it. I was able to see it. I was able to say, “Hey, this feels like you’re going through some things.” Because she wouldn’t have verbalized that otherwise. And we’ve always kept the conversation open in our family. Because she was probably about 7 or 8, I think, when I got hospitalized, and I didn’t want it to be a secret. And I also didn’t want them blaming themselves.
Lauren: And this was this was when you were hospitalized with the thyroid stuff?
Alicia: No, with the mental health — when I had gone into the psych ward.
Lauren: Oh, this is a whole part of the story we haven’t even talked about. Wow, okay. So you were hospitalized for mental health.
Alicia: Yeah, for a week. In 2012. She had to have been about 7, and I had gone for about two weeks without sleeping. And you know what that does. I was losing my mind, and I told my husband, “I’m having suicidal thoughts.” And he was, like, “Let’s take you to the emergency room.” We got to the emergency room, and they immediately were, like, “We’re gonna put you in the psych ward.” And so I went through that process. They have to do a 72-hour hold for suicidal ideation. But after my 72 hours, doctors came to me and said, “Hey, listen, we can let you go. We can’t force you to stay here. But we would like for you to stay here, so that we can get you the help you need. Your insurance covers it. We just want to get you adjusted to medication and have you stay here and do some therapy.” And so I did. I almost went home, I’m not going to lie. I was crying, “I want to go home to my family and my husband.”
Lauren: That’s tough too, because you’d already experienced a mistrust of the medical system. But this was an instance where they were actually trying to help you.
Alicia: Trying to help me, yeah. So my husband was just, like, “Let’s do it if it’s going to help you.” And so when I got home, my kids just knew that Mom had been gone for a week. They knew I was in the hospital, but they couldn’t come to see me because I wouldn’t let them. I’m, like, I don’t want them in the psych ward. My husband came to see me once and it was just such a weird experience. I was, like, “I don’t like that. Keep them away from this.” But when I came home, I talked with them. And I said, “You know, I want to talk to you about being sick.” Now, of course, my youngest was 3 or 4, so he didn’t understand.
But my daughter was of an age, and I said, “Listen, Mommy’s sick and it’s not a physical sickness. But sometimes Mommy gets really sad.
And Mommy needs medication to help her feel better. And if Mommy is sad, it’s not because of anything you do.” We kept the conversation appropriate to her age. And as they got older, we re-visited it, because it’s something that you need to know. So they are very well-versed in depression and anxiety, and can have open conversations about it. At first she was kind of embarrassed by what she was going through. We had to remind her, “You remember, you know what happened. Talk to me about it.” And we talk with my son the same way. You need to be able to discuss these things. So when it happens, or if it does happen, they feel safe.
Lauren: When I’m a mom, I want to be a mom like you! It’s amazing, because it would be my instinct as well to be open in communication with your kids about stuff like that. And the fact that you’ve been open not only about that, but about everything else you’re going through …
Alicia: Right. Because I grew up in an environment … my dad and my mom are polar opposites. They got divorced when I was about 11. My dad comes from a very ‘you don’t talk about your problems’ type of family; you sweep it under the rug. “I’m a black man, I got to be strong.” He’s not allowed weakness.
Lauren: That’s a big thing, too. If you’re a person of color, and if you’re male, and living up to that masculinity fantasy.
Alicia: Her experience was slightly different. My mom grew up in Bangor, Maine. So her experience was different. And it was also different because of the makeup of her family. Her family was very mixed; there was a mixture of races in her family. So even her experience as a woman of color was different. It’s amazing to see the dichotomy between her and my dad, the absolute difference between them and their experiences. But her family was a lot more receptive to conversation. So even though her family had people of color in it, they were probably a little bit different in that manner. My mom had a cousin who was in the psych ward, had a couple of family members who had been in hospitals way back when, in the ‘50s and ‘60s. So it was something very known in her family. Because of that she was more or less, like, “I want to talk to you guys, I want you guys to talk to me.” We didn’t always accept that, because we were kind of like my dad in that sense, like, “We’re not talking about our emotions or feelings. We’re gonna eat ‘em! We’re gonna smoke ‘em! We’re gonna drink ‘em!”
Lauren: I’d also like to get a drink with you! (laughs)
Alicia: My mom, I really appreciate the fact that she planted those seeds. It took me a while to come around to that. But I’m glad she planted those seeds, because they helped me be able to at least come into adulthood and realize … you cant sweep these things under the rug, people! It does help with raising my children — because now I know. I’m like a total … I’m sure for lack of a better word … like a Nazi when it comes to their health, too. I’m all over it. Anything that looks suspicious to me, I’m writing it down, and we’re going to take it …
Lauren: Well, there are plenty of white women out there who are like that with their kids, and no one gives them any problems. So why should it be any different for you to be a woman of color and to be advocating for your kids? I love that we’ve talked so much about all the things you’ve been through, but also the inherent injustices of the system and how they’ve affected the decisions that you’ve made.
I’ve been told by people I act like a white mom. And that is obnoxious, and I’m, like, “You have no idea how many black women really do advocate. There’s a whole group out there.”
Lauren: This is the other thing, that so much of what we’re fighting, the injustices we’re fighting against, it’s always been black women leading the charge.And recognizing that.
Alicia: There’s a group that I’m in for women of color with children who are on the spectrum who have ADHD. They had to end up creating their own groups, because in spaces where there was diversity, they weren’t being heard. It’s, like, “Oh, well, that’s not the same thing as what my son is going through. It’s different.” And I’m, like, “It’s not different. The environment might be different. And how your son is treated might be different. But they have the same condition.” But when a young white boy has ADHD, they make room for that. They’re like, “Oh, you know, he’s just growing. He’s going through something and he needs help.” If it happens with a black boy, he’s aggressive. Medicate him, put him away. And that is the difference. That’s the only difference in how they will be received. And that’s the scary part. I love when I talk to moms of all colors, because I understand that they understand; they know what that means. But there is a difference in our narratives because of the race. And that sucks. And I do love when I’m able to connect with women, and they’re able to understand that. Because I won’t sit up here and act like I’ve never gotten helpful tips from white women — because there have been white women who were, like, “Listen, you need to ask for this. You may not know that, but here, I’m going to tell you.” Be an ally. If there’s something that I don’t know, yes, speak up, help me out. And if there’s something that you have the privilege of being able to do, and I don’t, speak up against it. And make that information available, and make those spaces welcoming so that women of color know … hey, we do understand what you’re going through to a certain extent. Let me help you with that. If we could do more of that.
Lauren: If we could do more of the coming together and lifting one another up, it would make all the difference. So listen, we’ve covered so much today and I want to start to slide into the tail end of this interview, and I wrap things up with a couple of Top Three Lists, which I think you’ll probably have some fun with. I wanted to know, because you’re talking about tips you’ve gotten from white women, tips you’ve gotten from black women, tips you’ve gotten from all over the place … I’m wondering if you’ve got some tips to give, and what your top three tips would be for other people who are in this chronic illness space with you. What are the top three things that you would say to help them along the journey?
Alicia: First, you cannot be afraid to tell your truth. Fear is a very cumbersome thing. And fear — whether it’s fear of judgment, fear of reprisal, whatever the case might be — sometimes that keeps us from getting what we need because we’re afraid. So that’s the first thing. While the illness itself may be scary and fearful, you can’t be afraid to speak up and tell your truth. Because what you don’t say could be the thing that is either going to make or break your situation.
And don’t be afraid of ‘no’ either, because you’re going to get told ‘no’. And you have to be prepared to say, “I’m not accepting that ‘no’.”
Lauren: I’m like air clapping over here! I’ve been doing so much nodding and clapping listening to you!
Alicia: My second thing would be … you need to fight. And I know that sucks, because fighting is exhausting. But if you don’t fight, no one else is gonna do for you. And by fighting I don’t just mean fighting for your rights within the healthcare system. Fight for your right to go take a nap. Because sometimes we pressure ourselves so much to try to adhere to some standard that we can’t, because our bodies literally are, like, no, sit down! So fight for your ability to come to terms with your health. And that is always a work in progress.
Lauren: Which includes like lettin’ that flooper fly,
Alicia: Let the flooper fly! And the other thing — and I know this is gonna sound totally random and off the charts, but it’s not — don’t forget that you are human and you own your sexuality, even with chronic illness.
Alicia: People forget that. But we are still human beings who appreciate such an intimacy, and all those things. And it’s okay if it has to change.
If you’re not swinging from the chandeliers anymore, that’s all right! There are other ways.
Lauren: Maybe retire the sex swing, move on to a comfortable mattress!
Alicia: At the end of the day, don’t forget to feed that part of your being — because you deserve it. Sex and intimacy and romance are not relegated to the world of thin, healthy people. Whether you are chronically ill, whether you are fat, whether you are both, or either/or.
Lauren: If you live in a body, you deserve those things.
Alicia: You deserve those things. And I would tell people to remember, because those are probably the things I struggle with the most about this journey. And it’s not easy, but I’m grateful that I’ve done it. Remind yourself that you deserve a slice of happiness. Even when you’re going through these things, you deserve to be able to have peace of mind, and sleep good.
Lauren: And you’re a great example, because you’re someone who has been through it, and here you are celebrating all the wins on the other side.
Alicia: Yeah, look, I still struggle and I want to make that very clear. There are days when I just want to throw this Rollator out the window! I just want to get up and take a walk on my own terms. But that’s not gonna happen right now. And I’ve got to be okay with that. And I remind myself that it’s okay to grieve those things. It’s okay to mourn. It’s okay to be sad. You’re losing something. It’s okay. And I think we’ve gotta stop trying to adhere to this ‘healthy standard’. Everyone, including you, deserves that respect and that decency — despite your health status.
Lauren: Or despite how you present yourself,
Alicia: Right, so go, still live. I think chronic illness, and when it has mental health illness as well, can be really heavy. It’s a heavy burden to carry and we forget sometimes that, hey, we still deserve laughter and we still deserve joy. And when there are moments when we’re not in pain, run with it, if you can. You might be tired. But if you can enjoy it in the moment, do it.
Lauren: Find pleasure, whatever that means for you,
Alicia: Whatever that means for you. And if you have the good fortune of having a support system — even if it doesn’t come in a traditional sense of my husband or my wife, or my family — find your tribe. Because it will take you a long way.
If you’ve got to get online and find a social group or whatever, find your tribe.
Because support really is necessary through this. Wherever you can get your support from. I know that it’s a privilege to have insurance in this society, and have access to therapy and all those things. But if you can, use it.
Lauren: Absolutely. It’s interesting, because you also mentioned before we hit ‘record’, about that idea of being intimidated by some of the communities out there. And it’s also going … there’s no need to be intimidated by the communities that are out there. Just jump in. Everyone wants you to be here.
Alicia: Right. I think when I mentioned that intimidation to you, I think it was because in the beginning — because this has been about four years now — I didn’t know anything.
Lauren: Yeah, exactly. It’s hard to be a student again, when you’re an adult.
Alicia: And I’m seeing words thrown around like TPO (thyroid peroxidase)! You know what kind of blood test to ask for …
Lauren: I couldn’t agree more.
Alicia: I’m like, oh, I don’t know this. Well, let me go Google this. It was just so much information.
Lauren: But it’s about becoming a student in a new way, and being okay with that.
Alicia: And then pass the information along. Don’t be greedy. Share it. You just don’t know who doesn’t know what could help them. I would also say be really mindful, though. There are some eager beavers out there who buy into every essential oil, every tea …
Lauren: Yeah, use your good judgment.
Alicia: Use your judgment and discretion when you’re making those choices. But just know that there’s a wealth of information available to you. And there’s a wealth of communities out there.
Lauren: I love that. And one of them happens to be yours now. Now, let’s also get on to the last Top Three list. This one’s my favorite: Top Three Things that give you unbridled joy. So, things that … despite lifestyle changes you may have had to make to manage symptoms of your various illnesses. This can be guilty pleasures, secret indulgences, comfort activities — just three things that give you all the joy.
I can tell you right now, sex is at the top of my list.
Lauren: Yes, girl!
Alicia: Quarantine has been great! (laughs)
Lauren: For you maybe. I’m living here alone. It’s not so great over here! (laughs)
Alicia: I know, I know. I’m always thinking, God just knows that I needed to be married (laughs) I laugh because my husband and I are, like, this hasn’t been like this for too long.
Lauren: I guess we’re gonna have to lock the door now!
Alicia: I would also say, creating. And whatever that means. I am a writer, so blogging. Fashion is fun for me.
Lauren: Makeup. You love your makeup.
Alicia: Oh yeah, makeup is super therapeutic. I don’t care what anybody says about makeup.
Lauren: I find watching makeup tutorials to be so calming.
Alicia: They are. Just the steps. I can sit down at my little studio and start doing whatever I’m doing, and by the time I’m finished, I’m so relaxed and calm.
Lauren: It’s a canvas. It’s just like drawing or painting.
Alicia: Right. So creating is top of my list.
Lauren: But I like that sex was number one (laughs) Sex, creating. What’s number three?
Alicia: Sleep. It brings me joy. Especially when I’m able to do it without struggling. Because insomnia has been a little hard for me, but sleep — because I always feel rejuvenated. As long as I’m getting a restful sleep.
Lauren: Wearin’ that C-pap!
Alicia: And wine.
Lauren: Wine, yeah. A nice glass of wine!
Alicia: Wine, and the C-pap — puts me right out!
Lauren: Absolutely. That’s my kind of party, too. I love that. Can you tell everyone who’s tuning in right now where they can find you so they can continue to follow your journey.
Alicia: So my main site is www.APYoungBlog.com. It’s literally a one-stop shop, because you can shop my makeup on that site. You can also read blog articles. They’re all categorized, so there’s a tab for mental health, marriage, children, fashion … everything’s nice and neat for you. And of course, on all social media across all platforms, I’m APYoungBlog. On Instagram, Facebook, TikTok. Yeah, you guys, I’m over 30 and I have TikTok.
Lauren: I just joined. I joined since quarantine. But I haven’t done any challenges!
Alicia: Well, now you’ve got to dive right in and give us a challenge.
Lauren: I know. Oh, God.
Alicia: We need to see the dance moves!
Lauren: I should, I really need to do it. Ever since I interviewed Jen Msumba a couple of months ago, and she was, like, “Oh my God, you’ve gotta do the dances.”
Alicia: You’ve gotta go for it. My daughter’s been trying to convince me to do one of the dance challenges. and I’m just not getting comfortable with my gait and my limp on camera. But that’s going to be my next thing.
I’m gonna find a dance challenge that I can do, and I’m gonna do it. That’s on my list.
Lauren: I like that. I think that’s a great way to lean into that body acceptance, too — on every level.
Alicia: Yeah. I think when we talk about body acceptance … I’m so glad that you said, at every level … sometimes I think we focus so much on the physical appearance, but you really have to learn to adapt to your body as it is. Whatever that might mean. Whether you’re taking insulin or taking a medication. Because for a lot of people, just the popping of a pill can be …
Lauren: It can be triggering.
Alicia: Yeah, it can be very triggering. Even if it’s learning to be okay with the fact that I had a cupcake today. Whatever the case may be.
Lauren: I ate waffles for breakfast!
Alicia: I want to share that my husband made an excellent breakfast yesterday, and it was waffles and scrambled eggs and chicken!
Lauren: What kind of 5-star hotel are you livin’ in? (laughs)
Alicia: He’s the cook! I got really lucky with that. But part of me was like, I shouldn’t be eating this because I’m supposed to be losing weight. But also I’m, like, this is so good!
Lauren: You have to live your life. That’s the thing too, isn’t it. It’s finding balance. And that can be really hard to do.
Alicia: It can. Body acceptance … to me, that means so much more than am I going to be able to wear a crop top today? I probably will, okay. (laughs). It’s bigger than that. Because I don’t want to be at war with my body. I already feel like my body has been at war with me. And I just need to be able to love my body through whatever it’s going through right now. That’s the biggest takeaway I can give anybody — love yourself at all stages. Do not wait until you’ve reached some amazing status of your life. You deserve to be happy in your body, even if there’s things you want to change. And I’m not the person who will tell you, “Go lose weight.” That’s horrible. No. But don’t make your love of your body contingent upon it fitting into some mold — because you will never be happy. You will always be able to find something wrong with your body, because that’s just the human body. So nurture your body, the way we show compassion and nurture to your children, your mother or whoever.
Treat your body with the same compassion and grace, because you’re going to need it — because the world is not so kind. So you need to be kind to your body.
Lauren: I think that’s so beautifully said, and a beautiful place to wrap this up for today. Alicia, it has been such a joy speaking to you today. I have learned so much, I’m going to take so many of these lessons straight to my heart. And I’m just so thrilled to have connected with you, and to have really dug into all of these rich stories in your experience. Thank you so much for being willing to talk so openly about everything you’ve been through, and remind us that we’re not alone.
Alicia: Nope, absolutely not. So whatever crazy you’re feeling, trust me … somebody else out there feels the same.
Lauren: And there’s probably a blog about it!
Alicia: There is!
Lauren: Alicia, thank you so much.
Alicia: Thank you for having me.