Lorna Alexis is the influencer, model, blogger, and creator of Cystum of Curves. An advocate living with PCOS (polycystic ovarian syndrome), the word “cystum” is derived from the word cyst, a characteristic of the syndrome. PCOS is known to cause weight gain and make that weight even harder to lose — so instead of letting PCOS get her down, Lorna decided to use her diagnosis as a platform for inspiration and motivation for others as she navigates the world … with curves. In this honest, revealing, and intimate episode, Lorna addresses that #bodypositivity life, how she contracted Type 2 diabetes as a direct result of living with PCOS, how she manages a healthy lifestyle, and why representation matters.
Tune in as Lorna shares…
- what PCOS is: an endocrine disorder that begins in childbearing years and typically comes along with hormonal imbalance (usually excessive male hormone production), insulin resistance, hair loss/hirsutism, infrequent ovulation, irregular periods, blood clotting, and infertility/increased risk of miscarriage
- that PCOS is linked to many other conditions
- that some people living with PCOS develop cysts inside their ovaries — and the pain is similar to fibroid pain
- that she was diagnosed shortly after graduating college, while enduring menses that lasted for 120+ days
- that she wasn’t diagnosed right away, and also had to see several doctors before receiving the diagnosis
- that she started having symptoms as early as 12 years old
- that the doctor to diagnose her was Indian, and more familiar with PCOS than any of the American doctors she’d previously seen
- that the historical trope of the “bearded woman” was most likely a woman living with undiagnosed PCOS
- that most women living with PCOS need to be on low-carb diets in order to manage symptoms
- that she had to change her relationship to food
- what it’s like to live with fertility issues — and how she’s found strength in community and in being able to look toward other influencers and celebrities
- how she avoids sugar crashes and fatigue
- how routine supports her lifestyle and symptom management
- discrepancies and bias in research, funding, and awareness because PCOS is a women’s health issue
- that chronic illness changes the course of your life, and supportive mental healthcare is essential as you adjust to your new lifestyle and identity
- why it’s important to become your own advocate and prevent others from policing your body
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 the lovely Lorna Alexis, founder of Cystum of Curves. That’s spelled Cyst like cyst — and you’ll see why. She is a plus size model. And she also lives with PCOS and is an advocate for the condition — and she's going to talk to us all about it. So Lorna, thank you so much for joining us.
Lorna: Thank you for having me. I really get excited to talk about PCOS. I just think it's such an under-rated illness that a lot of people don't highlight, when it comes to women. We talk about a lot of conditions, but I think PCOS is so under-rated because people don't know how to really classify it … whether it's more a disorder or if it's an illness. I like to consider it an illness.
Lauren: Why don't you tell us what PCOS is, to start. Can you give our audience a little bit of a rundown of how it manifests, and what it's like?
Lorna: PCOS stands for Polycystic Ovary Syndrome. It is an endocrine disorder that starts at puberty. And what ends up happening when you're a woman that hits puberty or adolescence, it just really wreaks havoc on your entire hormonal system and the way that you develop as a woman. Typically, you have an overproduction of male hormones or androgens. Or you are, like me, insulin resistant, which ends up messing up your hormonal balance and mimics someone who does have excessive male hormone production. It's coupled with male pattern hair loss; inability for most to lose weight; sometimes to gain weight because the phenomenon is that there are extremely slim people who have PCOS and those are the women who struggle most with infertility issues.
It is the number one condition that causes miscarriages, and impacts just everything from your heart to your liver function to your mood.
It's been linked to anxiety and depression. So it's really a debilitating disorder that is now becoming more known, because they're starting to see that it's linked to so many other illnesses and conditions. For me, for example, not only do I have PCOS, but it manifested into diabetes because I did not understand fully what my insulin resistance meant. So once I realized that, I knew I had to go so much harder for PCOS because if it's not tackled the right way it manifests into other conditions along with having the PCOS at the baseline. So that's a quick rundown of what it is.
Lauren: Yeah, truly the quick rundown. It sounds like also, just from the definition of something like Polycystic Ovary Syndrome that we're looking also at the growth of cysts. Is that right?
Lorna: Yes. And that's the thing. Some people have cysts, some do not. I had cysts. That was one of the indicators along with my blood work. I had seven cysts inside of one ovary, and eight inside of the other. And it's painful, too; a lot of people don't realize how much pain you're in. If you think of fibroids, that's literally a growth on the outside. So imagine having small sacks on the inside when you're ovulating. Actually a lot of women with PCOS have infrequent ovulation, and other conditions.
Lauren: Yeah, that makes sense. Because your ovaries are sort of blocked up, essentially, right?
And the hormonal imbalance, it's almost like your body is out of sync and it doesn't know normalcy … like, okay, you're supposed to have a period every month.
When you have PCOS, some women have a period once a year or twice a year, or some women don't experience having menses for several years.
Lauren: It throws you out of whack, that’s for sure. So how did you first find out that you had this diagnosis, and what steps have you taken to regain control of your health since?
Lorna: So, funny enough, I was in college and I was having my period. And it was a period that never stopped. So you go, okay, seven days have passed; I'm still bleeding. Fourteen days pass; I'm still bleeding. Okay, 21 days pass; I'm still bleeding. So that point, I go to the doctor and they're just, like, "Oh, um, we just think that something's going on …” The disparities in health care … that's a whole other conversation.
Lauren: Oh, we’re gonna get into that!
Lorna: They literally tell me, “Oh, it may be that you're having a chemical malfunction in your brain.”
Lauren: That your brain’s not communicating??
Lorna: Literally, a doctor tells me this.
Lauren: So it's all in your head, essentially, is what he's telling you!
Lorna: It’s all my head, and it’s not shutting off my menses. So we're going to give you steroids and make you chew a pack of birth control, like, chewable birth control, and you're going to take the whole pack in two weeks.
So here I am chewing this birth control, taking the steroids, gaining weight … but the bleeding never stops.
I go back to the doctor, they don't know what's going on. They thought I had cancer, some rare blood disorder. So imagine telling your mom that. She’s freaking out, crying, trying to figure out what's going on. My blood count got so low, they thought they were going to need to give me a blood transfusion when I was in the hospital. But fortunately, the next week I stopped bleeding. But this was over about 120 days of just bleeding every day. So I graduated, I moved home, and I just never felt settled with that. I said, something's wrong and I'm not really sure what it is, but I need to go get my annual. That's when I found my primary care physician’s wife and she looked at me … not only was I plus size, but I was growing facial hair around my chin area and mustache area. I had some hair speckles on my chest. And she said, “I want to test you for polycystic ovary syndrome.” I hadn't even gone into the story about bleeding for that long. She does the ultrasound, and she said, "Yep, you have cysts in both of your ovaries. Let me do some blood work.” And then when the blood work came back, she said, "You have PCOS.” And I told her about the bleeding, and she said, “What probably happened, which is classic, is that you have cysts ruptured. So even though you thought you were having a period, you were actually going through the rupturing of cysts, which does cause extensive bleeding.” And I sat back, and I'm just, like, wow. And it all hit me because honestly, I started getting PCOS symptoms when I was 12. But when I was 12, no one knew about PCOS. So I remember my mom … she would clock my period, because I started getting my period around 11. And she’s clocking, clocking, making sure that I'm not pregnant. I missed my first period and she’s like, “You’re having sex.” And I’m, like, “I’m not!” She's making me take a pregnancy test. And she swore up and down that I had to be having sex because you're trained to think, back then, that the only way your daughter would miss her period if she's sexually active. But that was the first indicator, and it's one of the very first indicators that there's something hormonally wrong, with PCOS — because it starts as soon as you hit puberty; you’ll start getting those infrequent periods or you'll skip a period. And when I think, it was so hard for me to lose weight. At 12, I was gaining rapid amounts of weight. And I'm looking at my brothers — slim, and eating the same stuff in the house. Now don't get me wrong. I love food. So it wasn't like I wasn’t wanting a little extra helping here and there. But for the amount of weight I was gaining, it wasn't normal. And my mom didn't know how to counteract that. It started then. I happened to find out around 23 years old that it was PCOS, and not something else.
Lauren: It's interesting, too, because you mentioned to me before we started the interview that this doctor who actually discovered that you had it and tested you for it for the first time, was also not an American doctor, right? So it took someone from another culture in which PCOS is prevalent … because she was an Indian doctor, right … to actually think to test you for this. Now, these days, it's tested much more frequently. And we were talking about how the incidence of cases is rising, because more people are being tested for it more commonly. But at the time when you were tested, it was so infrequently discussed that it took someone, as you say, from another culture to go, “Hey, let's test you for this thing.” And she was, of course, right.
Lorna: Absolutely. And she was even explaining to me that, back in historical times when they would talk about the bearded woman, that was probably a woman who had PCOS.
Lauren: No!! Oh my God.
Lorna: Those symptoms of hirsutism? That is a PCOS sign.
Lauren: You’re blowin’ my mind right now!
Lorna: Yeah. So it's been around forever. It's just, no one knew what to call it. They didn't know why certain women had these beards.
And so they would make them circus acts or a phenomenon.
But she was, like, “Those were the first women who had the hormonal abnormality of PCOS.” In India, a lot of women had that happening. And so that's how they were in the know about it prior to American doctors, because we were just kind of, like, “Oh, well, maybe you just have some hair issues.” We weren't thinking, “Hey, it could be something else going on." Well, that's exactly what it was.
Lauren: Wow, oh that's pretty amazing. I've never even thought about that. And my gosh, it makes so much sense. Wow. So what have you done in order to stay in control? Have you had to have surgeries to have cysts removed since you got diagnosed? Do you go on hormones to balance everything out. How does treatment look?
Lorna: The funny thing about it is, the symptoms which develop from PCOS, you really can't do much surgery on. They can do ovarian drilling. But unlike fibroids, you can't pluck them off or remove them from the outside. They're inside of your ovaries. So, it's not one of those things where you can really manage that. But more importantly, the cysts aren't even the issue as much as the hormone imbalance that you have from having the disorder. So what treatment of PCOS classically looks like is: Okay, we're going to get you on metformin because more than likely, you're insulin resistant so your blood’s not breaking down, the sugar in your blood is not being broken down and converted to energy. Okay, well, we're going to try to balance you out and get you a regular period. So we're going to get you on birth control. When I started, that's what they would do, but every woman doesn't have the issue of the hormonal imbalance like me.
So the birth control actually knocked me off balance even more. It was bad … mood swings, depression.
I was in the hospital a few times due to pains and blood clot threats because another symptom of PCOS is that we clot easier. In my mind, I didn't know that. There are just so many issues.
Lauren: Well, and for those who are listening, one of the things that can happen when you take birth control, especially oral contraceptives, is that you are more likely to clot as well. So you're talking about double the risk there.
Lorna: Double the risk, yeah. So I was tested for a lot of that. And the metformin, it was so hard on the stomach. So I'm just sitting there in the beginning of my treatment, like, there’s got to be a better way. What I discovered in my process of learning about PCOS, it's really about what you're placing in, and the deficiencies that women with PCOS have. One of the things that we lack are B vitamins and heavily vitamin D, and supplementing those and eating foods rich in those actually help promote ovulation and help promote regularity. So it's one of those things that you really have to take a holistic approach to, in terms of what you're putting in — limiting how you get your protein … I've had to switch to making sure most of my meat is organic … limiting processed foods … and not eliminating sugar, but most women with PCOS who are insulin-resistant, we have to be on something like a South Beach Diet or a very high protein, low carbohydrate lifestyle. It's not even one of those things where it's a fad. It's just, our bodies don't break down the sugar. And sugar, when it's high in anyone, causes other imbalances with your organs and how your body functions. So that has been the major change that I've had to make.
And then the other thing I realized is, when you're insulin-resistant, like I was, you have to be tackling it like you're immediately pre-diabetic.
Because 90% of the time you are. So I’ve found an endocrinologist – who's also Indian, who specializes in PCOS — and she told me, “You should have been on diabetes medication when you were diagnosed as pre-diabetic, because you were insulin-resistant. Your insulin basically just doesn't work. So you needed assistance the whole time. And that probably would have prevented you from becoming diabetic.”
Lauren: And this is type 2 diabetes, right?
Lorna: Type 2, yes. She was, like, “Because that's what makes it hard for women with PCOS to typically lose weight, because they’re insulin-resistant. Sugar that doesn't convert over to energy becomes fat. So you’re sitting here, eating a muffin, thinking you're okay. That muffin for you does something different to your body than the normal woman walking around who can eat muffins.” Because it provides the energy to go to the gym. Doesn't do the same for me. A muffin will put me to sleep! I've seen it happen. Other people will be up and running. I can eat a bowl of cereal — and go to sleep. And when I was younger, I didn't realize it had anything to do with my insulin resistance.
Lauren: Of course, because you didn't know.
Lorna: Exactly. So treatment wise, that's been the major thing. And exercise. It's almost like a condition where a healthy lifestyle isn't an option. It’s not really an option for anyone. But it's definitely not an option for you if you want to maintain some sanity with PCOS. So for me, even though despite all the efforts to lose weight, I've had to really just change how I viewed food. My relationship with food had to change in order for me to be in control of some of the condition. Because a lot of it, you don't have control over because it's an imbalance, and you just don't know when your body's going to be like, oh, we're gonna be out of balance today. But you do have control over what you put on your plate, how you take care of yourself. And the things that are going to internally turn into triggers. Because one thing I’ll say with PCOS … and not to be overly long-winded … you have to tackle it as a whole. You can't just treat the symptoms. What the birth control would do is just mask it. You’re not treating what's causing the imbalance; you're not teaching women, “You have to do this in order to maintain this.” You're just, “Well, if we give you birth control and hope that you have a regular period, you should be okay."
But then when you want to go have kids, then you come off the Pill and you're wondering, well, why can't I get pregnant?
What's going on? Why am I not feeling in control?
Lauren: Because you're not in control anymore, yeah. Wow. So it really is quite a complex condition, and it sounds like you have to treat it on a case-by-case basis. But what's happened to you is that you've ended up with a second chronic condition. Because of the first one. So that’s a lot. And even discussing your relationship to food, especially as a woman … I mean, we're women in the world and when you're told that you have to basically spend the rest of your life on a South Beach Diet, that's gotta be a lot to get your head around, emotionally, too.
Lorna: It is, because it's a hard condition to explain socially to your friends. When you're out drinking and you're out wanting to do brunch, and you're out wanting to just enjoy life … which I still do. But I've had to literally understand that I'm not like everyone else, that it's not going to be the same walk in the park that my friends may experience. Like, when they're ready to have kids, it may instantaneously happen for them. For me … I don't have children just yet … but I have to think about … is this going to be easy as I prepare myself emotionally for a letdown? Or possibly maybe not, because a lot of research has helped women with PCOS become mothers and be pregnant. But you still have to realize that you're different. And that's hard socially, because you don't want to feel different. Nobody wants to be like, “I can't have … “ It's different from having an allergy, where it’s just one aversion. Versus, I have to literally live my life and walk it in a different direction. Because what you do may be completely harmful for me. I can’t eat cake all the time!
Lauren: Well, it's hard because, as you were saying about the muffin before, you eat that and it puts you to sleep. So you don't necessarily feel pain, or any kind of immediate response that you might feel if you had an allergy or something; you don't actually get sick from it. But it's not going to serve your body in the long-term either if you continue to live your life a little more freely in that way. You really do have to create more structure for yourself to maintain health. That's really tough. And you're a model, too, so I bet that's a whole other can of worms that you’re dealing with!
Lorna: It is, because when you go to modeling opportunities, everything they have is pasta salad or stuff that they deem is supposed to give you energy. And that's gonna do nothing for me! I do have some nuts because I can have some nuts. Or salad or something more protein-based, I can do that. But everything will be pasta.
Lauren: Well, that's an oversight! What model wants to sit and eat pasta anyway?!
Lorna: Imagine the bloating with chicken salad!
Lauren: So it sounds like this was really uncharted territory for you — when you got diagnosed and the journey to being diagnosed additionally with type 2 diabetes and everything, I'm wondering if at any point along the way you had advocates helping you out through the journey. Was your mom working as an advocate for you? Did your doctors act as advocates for you? Or, did you really have to learn at this young age how to do that yourself?
Lorna: I really had to learn, because a lot of people were hush-hush about having it. As I tell women … and I still meet women today … there's a lot of shame in feeling like your femininity is taken — because of the male pattern hair loss on your scalp, because of the facial hair growth, and just the inability of some women to conceive. Because unfortunately, not every woman with PCOS is going to be a mother. There are some women that are completely infertile and just feeling ashamed to not be able to do the function that women are “created” to be able to do.
This has kept a lot of women very, very quiet about having it. So I literally kind of had to create a space to make it more comfortable, and speak about it more.
And as I spoke about it more, there were women who found me that were starting to do the same. And that's kind of how Cystum of Curves came about, and how it started to grow, and how I started to see that there are more women out there who are willing to advocate. The advocacy is still growing, because again, a lot of women aren't public about the struggle. Even with celebrities. There’s a few, like Adrienne Bailon, who finally came out and said that that was one of her struggles; she had PCOS. And then Gabrielle Union spoke on her fertility struggles as well, and spoke to the PCOS community and other women who have issues conceiving. She had 11 miscarriages. No one knew that. But she was trying to conceive with her husband, and they just had to go with a surrogate and learn to love that process because, naturally, she could not carry a child of her own. And there are just so many others that are finally coming forth. Even Kim Kardashian … even though she didn't have PCOS, she literally could only carry those two children, she said, otherwise she would pass away. Which is why they keep having children through surrogacy. Fertility issues are very, very heart wrenching. And so to have PCOS and to feel like you may be infertile, I broke down when I first heard it — because I was told that I probably would not be able to be a mom. And growing up a girl from the South — I'm originally from Georgia — all you fantasize about is the big wedding and then having a bunch of babies.
Lauren: Well, that’s also the expectation that is arranged for us as women, isn't it.
Lorna: It is. And so to be told … and at that time, I had a boyfriend that I thought I was going to marry … to be told that you might not be able to have kids, and that's the whole goal of your partner … it was heart wrenching for me.
It took me a few years before I started speaking about it.
Because I’d had it for 10, but I did not start advocating for polycystic ovary syndrome until I really felt okay with … I need to talk about this because there's so many of us suffering and we don't know how to tackle this. And I’m learning and I'm growing. Now I have diabetes. And it's important that I help someone else not get to this stage — because diabetes is even scarier to me. You know, PCOS doesn't kill you. But what can manifest from not managing it right … that can kill you. That’s when I thought, I've got to be more vocal. Because PCOS is linked to heart disease. It's linked to high cholesterol and other diseases if it's mismanaged. Because our bodies just aren't functioning the same way as someone else who's completely healthy with no underlying illnesses. Even with the coronavirus scare right now, I'm definitely in the house because my immunity is compromised. And that's scary to think about.
Lauren: Yeah, absolutely. I think that's been quite a scare for the community of people living with chronic illness. We've been all a little bit like … we have pre-existing conditions, so we're gonna stay in the house right now! It's pretty full-on, I get it. And you've got two pre-existing conditions now. It sounds like it's been quite a journey more mentally than anything else. Obviously, there was the physical journey of managing your symptoms. But it sounds like the emotional toll that this illness has taken on you has really been the key learning experience here, too.
Lorna: It has, because another indicator for PCOS is the cystic belly. And that makes you shaped a little bit different. And when you're dating and you're out there … that's why I had to really become confident within myself and who I was. People are putting these expectations of society's beauty standard on you, and you can't respond with, “I'm going to join Weight Watchers, I can just drop this weight.” Women with PCOS, you could do everything someone else does and you might be lucky to lose 30 pounds in a year. Some, maybe more. But again, it takes so much effort to get what someone else can easily attain.
And I know in my love life, I've had in my past guys tell me, "Oh, you're perfect. I just wish you could be 40, 50 pounds smaller.”
Lauren: Like that’s no small thing!
Lorna: That’s no small thing.
Lauren: And also, how dare you!
Lorna: And also, get away from me. But yeah, I've had that happen. I remember going to Chronicon and a young lady came up to me and she started crying, and she was, like, “You're so beautiful and confident. I wish I could be that, because I feel like PCOS ruins my love life because guys don't want to date the big girl.” And she shows me a picture of herself before she knew she had PCOS, and where she was slimmer. She was, like, "I'm trying everything to lose weight. And it hurts me. So seeing someone like you inspires me that maybe I should be okay walking in my own shoes.” It made me cry, because, you know, you never understand who you're impacting until you hear something like that. Because I'm literally just doing it from the heart because I know that there's so much mismatched information. And there's so many women who aren't going to doctors who care enough to really navigate this with them. With PCOS AA (PCOS Awareness Association), for example, I know other women were watching me talk about PCOS AA, that went on their directory to find a good endocrinologist. That's how I found mine, because they have a directory of doctors who specialize in endocrine disorders, specifically endometriosis and PCOS, which is highly related. So, when I met her at Chronicon and just listening to those stories, I was, like, I have to keep going. Because I just don't know who's watching, but who needs it. And who may be still shy to talk about their journey, but they're watching my journey and learning so that they can help themselves quietly from the privacy of their home. Because not everyone's going to want to be public about their journey or their struggle. You know, they might be insecure with their illness. I know a lot of women with chronic illnesses that are very insecure, or it's a fragile area to speak about because they're always battling it. So I feel like some people are made to be the warriors, to be public, to help the ones that feel weaker, that don't want to come out with that — and want to learn other ways to cope. So I love advocacy for that. And I love being the person, now that I decided to speak about it, that can be a light to someone else. Because I'm all about helping people. That's one of the reasons why I stepped into modeling, to give out to women who aren't necessarily slim-framed, that you can still be beautiful.
You can still get up every day and feel amazing about yourself and you don't have to fit into this shrink-wrapped, cut it, mold it, make it perfect society standard.
And that's okay. You don't need that.
Lauren: I think that's really beautifully said. And it sounds like you've been through that journey and you're willing to share what you've learned along the way. I mean, that's what it's all about, isn't it. I wanted to ask what a typical day looks like for you, too. How are you balancing the demands of work and life while you're managing symptoms — and also managing your business, and still writing your blog posts, and being able to be that light for other people. How are you making it work?
Lorna: I will honestly say that it is a bit of a struggle sometimes, because you're wearing multiple hats. And one of the other conditions that comes with PCOS is chronic fatigue. So there are days where you literally do not want to get up and go to work. One of the ways that I absolutely cope is, I do take personal days when I need them. Because there are some days where I just need to detach, unwind and go to sleep for half the day, because I'm running, running, running, running. And my body unfortunately can't run to the brink of exhaustion like someone else who can just not sleep. Women with PCOS, we go through brain fog, we go through chronic fatigue, and literally any ounce of energy that we can get, we cherish. So personal days is one way I'm able to manage day to day. Honestly, the other thing is, I'm very, very, like I said, cognizant of what brings me up and what brings me down. Which is hard when you're in the office, and there are office parties and people wanting to do a lot. But I bring my food to work; I meal prep most of the time. And then if there is going to be a day where there's a party, I pick and choose specifically what I'm eating. Because I'm not productive if I'm falling asleep. And when I tell you, I used to fall asleep at work … if I ate certain things, I would have to go take a nap. My employer didn't know that I was going to take a nap. But it was, like, I can't function. I don't understand why I'm going through this narcolepsy-type sleep. That's before I found out I was insulin-resistant. So I'm eating a bowl of pasta and I can't keep my eyes open. My body can't do anything to break it down. So being cognizant of that has helped my day-to-day. Honestly, sticking to a schedule that's flexible. Now unfortunately, me being who I am, I hate routine. But I've learned that the only way for me to be successful is to have some ‘whatever’ routine, and to start being consistent and to begin being cognizant of … okay, this needs to be done this day, that day … so that I don't overwhelm myself and go through anxiety. So, planning out how I do what I do has helped. Because then I don't feel overwhelmed, and I’m not making bad choices, like being up all night. Or, I'm going to eat all the cookies, or I'm going to go to Taco Bell because that's all that's open.
Being on a routine helps me copes with my illness, because I'm able to stay in control — as opposed to being reactive because things are happening.
Especially with the diabetes portion; you have to eat, not by a certain time, but when you feel that twinge and your blood sugar is dropping, you need to. So, having snacks in certain places has helped. Literally you have to modify yourself surrounding your illness in order to maintain it, even with the goals that you have in place. So I have snacks in my purse.
Lauren: You're the best person to get lost with then. You always have snacks!
Lorna: Always have snacks! You never know when you need your protein bar. So that's really how I've been able to manage. But it does get tough, because now there are obligations and responsibilities, and sometimes you can get lost forgetting how to do your self-care routine. But you have to stick to it for it your health.
Lauren: Is it something that you also tell your employers about, like “Hey, I need this personal day,” or, “Hey, I can't eat that …” or whatever. So that they can understand?
Lorna: I have opened up about it a lot more because I don't want people questioning, “Well, why is she not eating this?”, or, “Why does she not want to participate …” and think that I'm not trying to be a part of the team. But it's moreso my health concerns. And then ironically, now in the equal opportunity employment paperwork, when they ask about disability, endocrine issues are considered a disability. That wasn't always the case.
Lauren: Wow, I didn't know that. That's pretty cool.
Lorna: Yeah, I knew diabetes was considered, but then I started seeing ‘thyroid’ and ‘endocrine’ and they had ‘endometriosis’. Because I think, now, employers are starting to realize that even though it's not something that’s devastating, or okay, well, they don't have a physical disability … Because most of the time when people think of disability, they think of something they can physically see.
Lauren: A wheelchair or a mobility aid, yeah.
Lorna: Yeah. But now they're starting to realize that there are a lot of things that we don't see that impact a person's performance at work. And once I saw that listed, I clicked ‘Yes’, because I need the accommodation.
The other thing in my adult life that I started realizing is that I have to have a job that offers some remote work.
Because if I'm not teleworking, the burnout is real. So I need at least a day a week — because then I can start my day earlier, end it earlier, rest up, and have that balance. It's about really knowing what works for you.
Lauren: Absolutely. So, have you ever been in a situation … obviously, aside from the early days when you were trying to get this diagnosis and didn't know what was going on for that first decade or so … have you been in a situation where you've been confronted and forced to validate or justify the fact that you have this illness to other people who couldn't see it?
Lorna: Not in a professional setting. But I've had to explain it to family and friends. They would undermine it … like, “Oh, you're not really feeling that way” or, “You're making excuses." Until I think what really hit them hard was the diabetes diagnosis. Then they finally realized my making the link and telling them, “This is why it was so important. This is why I was telling you guys I can't do this, I can't do that. Because I'm here now.” And as much as I wanted to prevent it, I'll be honest, in those earlier years, I definitely attempted but I did not advocate for me hard enough to find the type of medical staff that understood what I was going through. I was following the typical advice that most women with PCOS get. And it wasn't helping me. I didn't understand why. I'm taking the metformin. How did I still get diabetes? I've been on metformin for years; I take it. I've been taking my birth control. It took me going into the emergency room to come off the birth control. And realizing that it wasn't indeed doing its due diligence. It wasn't helping me at all.
Lauren: Well, and you realized then that you had to be more of an educated patient, I guess. Because the doctors weren’t serving you with what they knew.
Lorna: Yeah. And it forced me to find the advocacy areas. It forced me to step up and research even more. Because I just thought, that for some reason, if I took this birth control and took this metformin, I was protected. And when I still developed diabetes, I was, like, there's more to this that I'm not understanding.
I need to do more, because how did I get diabetes? How did I get here? I'm 30.
Lauren: Well, diabetes is one that I feel more people understand, because it affects perhaps a larger percentage of the population. Or at least, it's more widely recognized, and there's more research and more money behind it. Because it's also something that affects men as equally as it affects women.
Lorna: And I think that's the key word, that it affects men and women. Where PCOS only affects women. It's not, like, “Oh, it's breast cancer.” Because cancer can kill you in a short time period. So it shocks people. When they hear PCOS, they're like, "Oh, well, you can't die from it.” It's kind of just shrugged under the rug. It’s, like, “You’re not going to die from it”. But if you don't manage it, it's gonna lead to something else that's more deadly. And I don't want anyone to be in the position of deadly diseases. Like diabetes, as I tell people, if you don't manage yourself, that can be very deadly. Because that diabetic coma is real. I don’t want to go blind. I don't want to have neurological issues or my nerves … you just think about so much because, like you said, it's more widely accepted. And there is a large amount of people who suffer with diabetes.
So when I told friends and family, they were, like, “Yeah, she might be telling the truth about what she's going through.”
Lauren: But to have to go through not being believed, I think it's so hard, especially when you're dealing with a “women's health issue”. Because so much of medical research is biased against women, and in particular women of color, too. And it's true, when we know these facts, and yet people are still less likely to understand when we’re, like, “Hey, something's up. This is what's up …” and people still don't get it. It's because there's not enough research. There's not enough money, there's not enough discussion. So hopefully, people like you, talking about it so openly, are going to change that narrative as well.
Lorna: That’s what I'm hoping, and why I'm so happy to see that more doctors are asking women, they're wanting to perform the test, they’re wanting to make sure. Because they know that it will change the course of someone's life. Once you get diagnosed with PCOS, much like any chronic illness, it changes the course of your life. You have to really operate differently. And so it's important to tackle it earlier so that you have more of an ability to normalize yourself than doing it later.
Lauren: We've just touched on this idea of prejudice in medical research, and among friends and family trying to understand what's going on. Have you experienced undue prejudice, or maybe privilege? Either side of it in the healthcare system, particularly in regard to self-identity. So, in other words, because you're a woman of color, can you see your circumstances being different if you’d presented otherwise? Do you think people would have taken you more seriously if you were a white woman going into the doctor's office?
Lorna: You know, I hate having these conversations. But yes.
Lauren: But it's real. It's true. That’s medical bias.
Lorna: It’s very, very biased. I can say that until I got diabetes, a lot of my doctors didn't take it as seriously. Even now … it's going down … but I had a Baker’s cyst behind my right leg. The first time I went to the doctor, they were just, like, “Oh, you probably just pulled a muscle.” I’m, like, “No, I'm telling you, these are my symptoms. You just want to give me naproxen or some painkiller.” But what if it were something deeper? What if it was something like a deep vein thrombosis? What if it was something deeper, because it's in the lower extremity of my body?
I really feel like I don't know if they consider women of color to have stronger bodies, or that we're making it up …
Lauren: Oh, well, there are statistics and studies that show that a lot of people presume that women of color can endure more pain.
Lorna: And it's crazy to think that we’d want to have more pain.
Lauren: It’s all BS.
Lorna: It’s all BS, yeah. And even if it were true, which we know it’s not, who wants to be in pain. Nobody wants to be in pain. So the fact that you would shrug symptoms under the rug, and be, like, “Oh, you're making it up,” or, "You can deal with it a little bit more.” It's crazy to me. My OB?GYN, I had to stop the going to him because our business would be maybe 10 minutes. I’m, like, “I need to have a conversation with you. I need to really go into depth with you about what I'm going through.”
Lauren: Was that something about the healthcare system? Do you think that the visits were 10 minutes because so many doctors are strapped, that 10 to 15 minutes is all they get with their patients because of the health insurance system?
Lorna: I do. I feel like greed is a huge thing. You know, the more patients you see the more money you're making, the more claims are being filed, the more kickback you're getting. Even with the way they prescribe certain medications. If you're getting a kickback to prescribe this medication over that one because you've negotiated this out with the pharmacy rep … You're not necessarily in it for the betterment of the patient, but for the wealth factor. So I just think that the way we view health in America as a privilege instead of a necessity, like some other countries, has definitely changed the level of care received by some of us. Especially with women.
Women across the board are undermined when it comes to health care. And then you add on women of color, and it's just like … we’re not taking it seriously.
We're just not taking it seriously. And it's unfortunate, because there are so many conditions and chronic illnesses that require that extra layer of care.
Lauren: Would you say that it's a public health crisis?
Lorna: I would.
Lauren: I would agree.
Lorna: We live in such a technically savvy world, there’s, to me, no reason so many women should be dying giving birth, especially women of color. There's no reason certain issues are still happening with medical malpractice in this technically savvy world. Even what we're dealing with now with the coronavirus. It's so sad, but we've had our hospitals struggling for years, decades even — under-supplied, beds not being updated, ventilator orders not being fulfilled, money being taken away to prevent the growth and expansion of these health care systems. And now we're forcing people to reopen labs, to make masks, and there's not enough room at these hospitals because money went elsewhere. So even being in America watching how the coronavirus is literally a beast ravaging through states, and watching sources just dry up, it’s really frightening.
Lauren: Yeah, it's very frightening. We know, certainly, ways in which the healthcare system isn't working for patients. What about ways in which it's working? Have you had experiences that have made you see it in a positive way? Or do you think the whole thing needs to be overhauled?
Lorna: I don't want to say overhaul, but I definitely think that revamping is an important part. You know, even though people did not vote for Hillary, I was very, very, very supportive.
Lauren: I’d like to say people did vote for Hillary actually. If we recall, she had the popular vote!
Lorna: She did. And honestly and technically, she's supposed to be President, but we won't get into a political thing!
Lauren: That's for another podcast! (laughs)
Lorna: That's for another podcast. She was supposed to be President. But one of the main things that I loved about her run is her take on healthcare and universal healthcare. Because it works. It's been proven to work in other spaces. And taking away the luxury of healthcare, just like we should take away the luxury of education … education shouldn't be a luxury if you choose to have it.
We shouldn't be paying astronomical prices to be educated, to then get into the workforce and make sure that our economy can run.
So you’re asking us to go into debt to contribute to the economic development of the US.
Lauren: These are human rights, they're not luxuries.
Lorna: Right. When you think about other countries like Germany and Canada, and just other spaces in which they have not overly glorified the medical field, or the education system, there's a different level of care and a different level of accessibility that people receive. And I think that we just need to revamp it all together. The fact that, even during the Obama administration, we were having arguments over making it a human right to have health insurance, and making sure that there were limitations on the biases that health insurance companies place on the average citizen, is ridiculous to me. So you think it's okay to tell someone who has a pre-existing condition that they can't help, or a chronic illness that they can't help, that they're not allowed to have health insurance because it's expensive to keep them alive? That's not okay. I could go on and on about that.
Lauren: I agree!
Lorna: There's no way where I would say the health system is in an amazing space. No. There's no instance that I would ever support that.
Lauren: I’m with you on that one. So we're heading into the tail end of our interview. And we’ll brighten things up a little bit with a couple of Top Three lists that I like to wrap up with. I was wondering if you could give us your top three tips for someone who is maybe in this chronic illness space with you and I. Maybe they've got something off and they're not sure. Maybe they're already diagnosed. What would you recommend for people going into this space, particularly with regard to PCOS and diabetes?
Lorna: The number one thing that I would recommend is your mental health.
Therapy is a necessity for chronic illness. Because grasping that reality that you need to change — and doing it — are two different things.
There's a lot of anxiety and depression that goes into having chronic illness because every day does not look picture-perfect. In fact, you probably may experience more low days than high days on a regular basis. And having the mental health support is needed. Because even if you don't have a mental health issue, having a chronic illness may help you develop one. Because your life changes, and just simple things … with me, having diabetes, it affects even your joints. It affects how your body just operates. So certain things that I used to enjoy, or the energy I used to have prior to having a diagnosis, has changed. And that weighs on you internally and mentally. So that would be my number one thing, to make sure you have the mental health support. And it may not come through a friend or family; actually, I recommend the professional. If you can get someone professionally, definitely do it. Because you're going to need that support to normalize yourself and to know that you're okay. You being different doesn't mean that you're not okay. The next thing that I would recommend for someone in this space is to find a support system of people who look, feel, think and understand you. Because you're going to go through a lot of opposition through people who don't experience what you do. And that's not even chronic illness, that’s just in life in general. If someone can't relate, they're not going to know how to be a supportive person a lot of times. You get some people who are just super empathetic, and they can feel everything people around them feel. But not everyone's like that. We live in a selfish world. So it's important to find people who look, feel and think and know what your struggle is. Because on those low days, they know how to speak life into you to keep you going. And it's easier to laugh about your illness with someone who gets it because if someone’s, like, “You're being morbid," it’s, like, “Well, today I just want to be light about me falling asleep when I eat a slice of pizza.”
Lauren: I love that! I’m happy to have a pizza date followed by naps anytime! (laughs)
Lorna: Right? And it's okay for us to have this joke. And the last thing that I would recommend for someone in this space is, literally be your own advocate.
Don't allow someone who doesn't know what they are talking about to police your body, or police your wisdom.
A lot of people will say, “Oh well, you should eat this apple.” That's not going to work today for me. I know my body; I know what I need to do. You don't have the education to police it, and you have to block that because sometimes people will put all this on you. And then you just start to feel more different.
Lauren: Well, this leads me into the next question I was going to ask you … your Top Three things that give you unbridled joy; that despite lifestyle changes you've had to put into action to stay healthy, things that you're unwilling to compromise on. So this can be guilty pleasures. It can be secret indulgences, it could be comfort activities. What are your top three?
Lorna: I really love ice cream. I'm just not willing to give it up. Ice cream makes my heart happy. So there are moments where I just need it with a Girl Scout cookie. A Samoa with vanilla ice cream …
Lauren: You can make a little Samoa sandwich.
Lorna: Exactly. And honestly, they probably should make baby Samoa sandwiches for people who have addictions to those types of foods.
Lauren: Let it be said that Lorna came up with this idea, so Girl Scouts … please send the proceeds!
Lorna: Little baby Girl Scout sandwiches for the freezer would be beautiful.
Lauren: That would be amazing!
Lorna: I love ice cream, despite the lifestyle change. I also love Italian food. Now, I limit that specifically, but I love all things pasta. The moment I found out I was diabetic … the way pasta hits my spirit … that I can only sparingly eat you. I promise in another life I was an Italian, so I can eat pasta … in all its forms … with any additives … as much as possible.
Lauren: Well, at least that's good because if you're going to indulge in pasta, you're really going to get good stuff, too. You're not going to have crappy microwave pasta. You're going to have really good fresh stuff.
Lorna: Yeah, I have to have the good stuff. The stuff that puts you to sleep.
Lauren: It puts us to sleep. I don’t know about everyone else. Good night!
Lorna: My other one … honestly, I just really like fried stuff.
Lauren: You’re from the South, so it’s in you!
Lorna: Yes! Having any of these conditions goes against my entire genetic makeup, and my entire cultural upbringing. We are frying Twinkies in Georgia. Everything can be powdered and fried … okra, chicken. To know that I can't just get a fried piece of catfish regularly, it hurts. It does hurt spiritually. I have limited it, but I can't get rid of it. You get those people who are diagnosed with their chronic illness and they’re, like, “I will never touch such and such. I gave up all of this!” And I'm just like, yo, if you expect me to never eat ice cream … I'm one of those people that needs to be whole or don't have it at all. I'm not doing diet ice cream, I don't want the Splenda, and in fact, it's not good for you. I tell people all the time, ”You think you're doing something healthy by getting the sugar free? It's not because that's chemicals." And actually I found out, being diabetic and from my endocrinologist, that there's trace sugar in it anyway. So not only are you taking in the chemical, you're taking in sugar anyway. So you may as well have the sugar in moderation than to stuff your face with fake sugar. I don't do diet Cokes. I don't do lite ice cream or any of that; I just have the whole thing. Because I've noticed that when I have it whole, I don't crave it as much anymore. Because I will overeat something that I think is healthy, in that category. My brain is just, like, well, it's a fat-free cookie so I can have 10. Where, if it's a whole chocolate chip cookie, I’m, like, I can only have two. I know what it comes with. So that's how I get around it. But yeah, I can't give those three items up. I've tried.
Lauren: I'm with you. I feel you. I shouldn't have dairy because it makes me, digestively, not in the best way. Sometimes, you just need to have your full-fat full-cream ice cream. Because you need it. I couldn't agree more. Mac and cheese. Oh, I've had a craving for that the last few days, and I've been, like, I need to go out and get some. There's actually a great way to do mac and cheese without the dairy.
Lauren: With butternut squash and nutritional yeast. It's pretty good, and it's super creamy.
Lorna: I need to look that up.
Lauren: I'll send you a recipe. I was gonna go out and get some butternut squash today! I need my comfort foods. I need my mac and cheese.
Lorna: Exactly. I'm with you. I'm one of the PCOS women, who once I came off birth control, I got my period regularly. So now I know when I'm about to be in that need for food.
Lauren: It’s almost mac and cheese time, is that what you’re sayin’?
Lorna: Yes. Instead of me going and finding a restaurant that's gonna make it all bad, the making it yourself substitute is good.
Lauren: Absolutely. Well, is there anything else that you'd like to share? I'd love you to tell everyone tuning in where they can find your blog and all your work.
Lorna: So I have my blog. It's CystumOfCurves.com. The Cystum specifically refers to the cysts that women go through. I’m also CystumOfCurves on Instagram; that’s where you can keep up with the modeling, and other places and spaces that I travel to, to advocate, and my lifestyle stuff. Any questions that anyone ever has when they are following or if they decide to follow me, feel free to ask. I think I'm friendly.
Lauren: I think you're totally friendly. Guys, she’s friendly!
Lorna: I just love to help. If there's any questions, I will always be there to answer, especially when it has to do with PCOS. I absolutely adore helping women with PCOS-related illness and questions. Even if you have another chronic illness, there's someone in my life … because now I'm in the chroni-community, I call it.
Lauren: Oh, I like it!
Lorna: Yes, I have a plethora of women who are out there advocating for different illnesses … lupus, hypothyroidism, arthritis.
So there's so many women in my life now that I could direct people to, when you need to just feel encouraged.
So definitely reach out and tell me hello, and I'm gonna say hi back.
Lauren: Well, you said hi back to me when I reached out. I'm really glad that we got to chat today. And we're going to be chattin’ more. Thank you so much for taking the time today. I hope you're continuing to stay safe in the middle of this corona madness. And I can't wait to chat more and hopefully meet you at the next Chronicon.
Lorna: Yes, thank you for having me. I've really enjoyed our conversation. Thank you so much, and I look forward to the future and just seeing everything grow.
Lauren: Same for you! Thanks so much, Lorna.