Episode 123: Don’t Judge A Book By Its Cover: Shayla Swint on Life with EDS

Episode 123: Don’t Judge A Book By Its Cover: Shayla Swint on Life with EDS

Overview

Shayla Swint is a 25-year-old college grad from Houston, Texas. Like the old adage, “Don’t judge a book by its cover,” Shayla is so much more than what we can see…she lives with connective tissue disorder Ehlers-Danlos Syndrome (EDS), hypermobile type. She’s survived over 15 surgeries thus far, and lives in an almost-constant state of pain and anxiety due to the condition. When she says that “her body’s trying not to fall apart,” it almost seems an understatement. And yet…she manages to keep going. In this interview, she tells us her story.

Takeaway

Transcript

Shayla Swint EDS Ehlers Danlos Syndrome zebra Uninvisible Pod

Lauren: All right guys, thank you so much for joining us. I am here today with Shayla Swint. Shayla lives with Ehlers-Danlos Syndrome. We've talked about it on the show before, but I'm excited to have her on to talk about her experience. Shayla, thank you so much for joining us on the show today.

Shayla: Thank you so much for having me. I'm so excited to talk today.

Lauren: Absolutely. So I love to start at the beginning of these stories of diagnosis and illness. Can you tell us when and how you first realized that you were sick, and how you've managed your health since then?

Shayla: Okay, so I think my first memory where I knew something just was different or wasn't right … I was in gymnastics, and I was in cheerleading. And for people who are familiar with EDS, it's basically a connective tissue disorder. So it affects the joints. I just remember, I would always get these little petty injuries. But I also remember that my gym coaches would tell my mom and dad, “Oh my gosh, she is so flexible. She is amazing. She can do anything we ask her to do, there is no problem. She's more flexible than all the other children.” And so I would say for about two years, it was fine. But then I can remember personally … I’m, like, my body just hurts. And I don't know, I was 7 or 8 so I wasn't sure if that was normal or not. And I honestly didn't say anything to anybody because none of my other friends were saying their body hurts.

Lauren: That’s a narrative we hear, that people aren’t talking about it, because no one else is/

Shayla: I just had no clue. I had no idea. I can remember waking up and thinking, oh, this hurts, that hurts. I remember when I was doing all these amazing stretches and being flexible that I felt a lot of discomfort. But then again, nobody else was saying that it hurt. And as a child hearing, "Oh, she's so good” … it made me feel good in a way. So I didn't say much. But my mom, she eventually pulled me because she just didn't like all the petty injuries. But I do remember at 13, that was the age … I was playing with my brother in the house, what we're not supposed to be doing. And we were doing flips off of the couch.

And when I landed, my shoulder completely came out — it was dislocated completely.

So long story short, we ended up going to … I’m from Atlanta, so Children's Orthopedics. And that's where I got a diagnosis from Dr. Bush; he kind of suspected something was wrong, because he said, “She's just too flexible. And her limbs, the range is extraordinary.” That was the first time we had heard what Ehlers-Danlos was. But of course, he couldn't give me a diagnosis; from him, it was just suspicion.

Lauren: That’s so interesting, because often when I hear these stories about EDS, there's a huge span of time between onset of symptoms and diagnosis. Obviously you had several years there, from being 7 or 8 to being 13 and dislocating your shoulder. But one of the first doctors who you saw had an early suspicion that this was EDS. That was kind of miraculous. It's almost like a lucky thing that you had an injury that required you to see an orthopedist.

Shayla: It is. And of course we had never heard of it. My mom started doing all this research. And then we saw that it was hereditary. But, like you said, it's years before you get a diagnosis. I'm sure we'll get into my official diagnosis, but it was a long journey, I can guarantee you that. 

Lauren: Absolutely. We talked to Lara Bloom last year on the show, who runs the Ehlers-Danlos Society. And she told us there's no such thing as an Ehlers-Danlos specialist, right. I know there are doctors who are familiar with it. But because there's no such doctor that you can actually seek out, how did you end up finding a practitioner who could treat you and getting a diagnosis?

Shayla: Okay, so that was 13. So let's say between 13 and 18, I had multiple surgeries — knee surgeries, shoulder surgeries. During all this time, I was still just going back and forth to Dr. Bush; I actually stayed with him till 21 because that's when you age out of peds. I didn't get an official diagnosis until I was 23. Like you said, there wasn't a test that they took. I went to Emory Genetics, and that's where I saw a specialist, and he said, “I believe it's Ehlers-Danlos hypermobility. There’s no blood test or anything that we could run or give you, but from my opinion, what I've seen from other people, I can say that's what I believe that it is.”

Lauren: Wow. So what was it like getting that diagnosis? Was it validating, or did it feel a bit like you'd had the rug pulled out from under you?

Shayla: Oh, it was very validating.

I cried once I got home, back to the car. Because it was just years of people saying, “Oh, there's nothing wrong with you, you're fine.”

And then I went to a rheumatologist, and she told me, “Well, Black people, they don't get EDS.”

Lauren: What?!

Shayla: Yes! So that was hard, because I know what I feel and how I wake up every day in some kind of chronic pain.

Lauren: This is racism and gaslighting, together, from this person. That is pretty horrible.

Shayla: Yes! She didn't even give me a chance to explain who I was, and my story. She came in and said, “Yes, I reviewed your chart and your history, and I don't think it's EDS, and I don't think it's anything with pain, honestly. I just feel like you should go see a therapist.” 

Lauren: She also told you you weren't in pain. Fantastic.

Shayla: Yes. Right. Exactly. Just, “I feel like you should seek therapy and just try to get a hold on what's going on mentally.” And so with that, I can tell you, I shut down. I was just, like, I'm not going back to any appointments. I'm not going back to any doctor. I'll just try to manage my pain best I can.

Lauren: You wonder where a mistrust of the medical system comes from when anyone experiences this kind of thing. But when this is something that's so common in the Black community, too, to not believe your pain and really disenfranchise you.

Shayla: Right, immediately. And not even give me a chance to tell my story and what I go through every day. That was one of the worst appointments. I've never had a doctor say, “Well, why are you here? And can you tell me a little about what's going on?” She just had this preconceived notion: Black people don't get it, so I need to get on to the next appointment for the day. That was about two years before I went to the doctor who told me, “Yeah, it's definitely hypermobility EDS. I can see it all over.” So like you said, it was very validating, because I know. It wasn't in my head. I know. 

Lauren: Absolutely. So what about in terms of maintaining your health? You've got this diagnosis, you know that you have a connective tissue disorder. You've had tons of surgeries. How are you maintaining your body's health, knowing that you have this diagnosis that you're gonna have to work with for the rest of your life?

Shayla: First thing, I do try to keep my mental state as stable as possible. I do have a therapist that I go to and meet with, because I feel like mental health is really something important with a chronic illness.

Because it's going to be here forever. It's chronic. It's not going away.

Lauren: Was that something that was offered to you right away as well? Or was that something that you saw individually? Because it's one of those things that we know, — because we're chronically ill — about the mind/body connection. But often, because of holdups with health insurance or doctors who don't get the holistic point-of-view, it takes us as patients saying, “Hey, I'm gonna need to talk to a therapist, because this is life-changing.” Was this something that you did yourself, or was it something that someone suggested?

Shayla: My mom suggested it, but nobody in healthcare suggested it. Let's go back to 13. And then that gap, where I'm just having all these surgeries. That’s school age, I’m missing school all the time, and people were, like, "Shayla, what's wrong with you? You’re always having surgery.” My mom, she noticed, and I have to really thank her for that; she realized … okay, this is going to be something chronic for her. Let me do something now so she's able to cope with this. So she put me in therapy. The therapist was great; I'm with her to this day. And so that really helped me be able to cope.  What’s most important for me is just making sure my mind … I'm not going to get down on myself, because it's easy to just get down on yourself and be, like, why me? Why do I have to go through this? So that's one of the main things. I do have I like to say maintenance meds — pain medication and other medications I'm on for the co-morbid conditions. I try to do my own kind of physical therapy at home, and low-impact workouts, just to build and help the muscle tissue. Some people are, like, “You just need to work out and you'll be fine.” But for me, it doesn't take my pain away. Nothing takes my pain away. Even when I was in physical therapy for months, it wasn't taking my pain away. It was just making it a more manageable level so I can get out of bed and do what I need to do every day. I'm also trying to see if I want to make the transition to being vegan. Because I heard that can help with chronic pain and inflammation in the body. So I've been researching that and trying to cut meat out here and there — like a day here and a day there — just to see how I feel.

Lauren: It sounds like it’s a very holistic approach. Aside from those maintenance meds, this is a holistic approach to your health.

Shayla: Yes, that’s exactly what it is. And that's kind of the way I want to go. I'm not gonna sit here and down anybody who takes medication. Because, like I said, I have mine, and if I have to take a pain pill to get through my day, I'm going to do it. But I definitely have been researching and looking at other holistic ways to cope, and see what helps me.

Lauren: That's awesome. It sounds like your mom was an advocate for you pretty early on, especially with helping you with the mental health side of this diagnosis. So how has that impacted your relationship? Getting this kind of lifelong life-changing diagnosis, your mom seeing that the entire time you were growing up, and acting as a caregiver for you in many ways. How has that changed your relationship with her? Has it given you an opportunity to be closer in some ways?

Shayla: Yes, we are. We've drawn very close because with the surgeries, and she’s taking off work and being the caretaker and giver. But she also suffers; she's a chronic migraine sufferer, so she understands being in that state of chronic pain. But now that I'm older, and I've realized, wow, so Mommy, you were in chronic pain, but you are here being my caregiver.

I just have a whole new respect, and I see my mom in a different light. She's definitely my advocate.

I’m just at the point now, at 25, where I can go to doctors’ appointments and say, “Well, this is what's wrong with me. And this is what I'm feeling and experiencing every day.” Especially after that appointment with the other doctor, I just kind of shut down, and I didn't want to talk to anybody. That was the first time my mom missed an appointment because she had to work that day. Of course, that would happen, the one time that she's not there! But it's definitely brought us closer. We both understand each other, because she knows what it's like every day to wake up in some sort of pain. As do I. People call us twins, because we can basically read one other's minds. But she is definitely my person.

Lauren: That’s so lovely. Again, this is a common story we hear, for the most part, especially when you're looking at a diagnosis that starts when you're a kid, when you're in pediatrics. Patients and their families getting closer because of it. And that's kind of a beautiful thing. That's where it's that blessing in disguise. Especially because your mom could literally understand chronic pain. 

Shayla: Yes. And I think that's what makes it so special and so unique, because she truly understands.

Lauren: So what is a typical day looking like for you? How are you balancing the demands of work and life as you work around your body's needs and mitigating potential symptoms?

Shayla: I would definitely say it's a struggle, it really is. I'm a recent college grad; I graduated back in May. 

Lauren: Congratulations!

Shayla: Thank you! So that was definitely a challenge in itself, finishing school. Transitioning into work life, it's just making sure that I'm not overdoing it. And learning how to say, Shayla, you're going to have to take a day. If you don't take a day, you're going to be forced to take five days. So it's important. I'm learning I have to listen to my body very early on, because I've been that person … push, push, push, push, push. And then I have to go to the hospital to get an IV drip for pain management, because I haven't listened. So definitely I try to make sure that I'm doing what I can before my body forces me to sit down.

Lauren: Are you finding that employers are open to your needs, and your potential adjustments? Are you being open with them about your diagnosis?

Shayla: I worked at T Mobile. That's past tense. I really enjoyed working at that job, I really did. But I needed to ask if I could have a stool, on the floor, if I'm behind the counter, or even when we don't have customers in the store, if I could have a stool to sit down on so I don't get completely exhausted or fatigued. I didn't think it would be an issue, because I go on AT&T, I go on Sprint, I go on Verizon — and their employees, they always have stools behind the counter. So they told me, “Well, that's not really the look we're going for in our store. So, if you need to just take more breaks, you can take more breaks. But make sure you clock out.” I just really didn't understand why a stool, and me still doing my job and still performing … why that would be an issue. Especially when it's for health reasons.

I'm not sitting down because I don't want to stand up. If I could stand up for my whole shift, then I would do it and it'd be fine.

Especially with my knee surgeries and everything, sometimes I just have to sit down; that way, I just don't feel that fatigue. So that was one employer where I can definitely say they were not supportive at all.

Lauren: I’m going to call disability discrimination on them right there.

Shayla: My mom told me to! And I was just, like, you know what, don't worry about it. Because it just made me upset. That's another pet peeve of mine … I want to learn how to be more of an advocate for myself, but sometimes you just get so frustrated, and you're just, like, you know, whatever. So they were definitely the job that didn't want to work with me at all. 

Lauren: And you told them you had a disability?

Shayla: Oh yes! Emails …

Lauren: They didn't care.

Lauren: But that they also wanted you to clock out for extra breaks is them actively seeking to avoid accommodations for your disability. If you're making people stand on the floor, you are leaving out 25% of the population who can't do that all day. That's really small-minded thinking,

Shayla: And another issue … employees had to go to the back door. I have a handicap placard, and I said, “Well, you know, so I don't have to walk around the building and put extra steps on my body, can I just walk in the front door so I can mitigate my symptoms?” And that was an issue, too. It was a lot of things with T-Mobile.

Lauren: This is another reason why a lot of people don't pursue legal action — it's so triggering, isn't it, to relive those experiences.

Shayla: And just trying to convince somebody … I’m not doing this for any kind of vanity reasons. I really need this thing.

Lauren: And employers are not getting enough suits against them, and so they don't see the need to make these adjustments. And so the vicious cycle continues.

Shayla: Right, and they think it's okay, and they just continue to treat, like you said, 25% of the population, in this manner. Yes, it's very tricky. My mom said, “We need to do something.” I’m, like, “Mommy, I don't even want to deal with it.” I'm in an education now; I work with kindergartners. And we’re virtual. So I'm able to be really great with work/life balance, because I'm at home. Right now, I have absolutely no complaints. I'm so, so thankful for where I am right now in my profession.

Lauren: Absolutely. That goes to show, virtual opportunities also make us a lot more comfortable when we're dealing with different levels of physical ability. Having that kind of flexibility, as an employer, is super important. So, aside from these situations where you've been brazenly ignored by employers, or that doctor who told you, “Black people can't have EDS” … have you been in other situations where you've been confronted by people who literally couldn't see that you have a disability — because you weren't walking around with a walker or a wheelchair. And you had to justify or validate the existence of your diagnosis to them because they simply couldn't see it? What are those situations like for you?

Shayla: One situation when I was in school, I had a professor … every semester I would go through all the processes I needed to with disability, so my absences would be covered. I had this one professor … and this was a very hard semester, for me; my pain was at 2000 every day, and I was still trying to make it and go to class and do what I needed to do to be a successful student. But this particular semester, this one month, I missed, I would say, maybe 15 days that entire month. Like I said, I had my paperwork on file, doctors’ notes and everything to say she gets days where she can miss class with no penalty. And so when I came back to campus, to go talk to the professor, I said, “I've missed a few days, I just wanted to get caught up. Let me know what your expectation is for me for my assignments.”

And the professor looked at me and said, “Well, you come in here every day with your nice clothes and your makeup and your hair done. I don't like when people try to pull one over on me.”

And so I said, “Okay,” walked out, went to the bathroom and cried, regained my composure. And I went back in there. and I had an article that my friend did for me about invisible illnesses and chronic illness. I sent it to him, and I said, “When you get a chance, I would like for you to read this article. You and a lot of people in society have to stop looking at people and their outside appearances, and assume that because they're not in a wheelchair, or you don't have a cane or walker, that you can't be a person with a disability.  I have nothing to gain from missing 15 of your classes, not coming to class. And I didn't want to come in here and try to beg. Or even for you to think I would lie to you. I need to get these assignments made up.” And to say that to somebody’s face? I was a good student, even with everything going on.

Lauren: Good for you for educating, though, for using that as an opportunity for growth.

Shayla: Yes! I always have issues using my handicap placard. At the grocery store, or even when I was parking on campus, people come up to me and say things. One lady, she was, like, “You need to stop using your grandmother's handicap sticker.” Just the audacity and the nerve to even go up to somebody and say anything … it's baffling to me that society is just so unaccepting of invisible disabilities. Sometimes if I'm in the mood, I'll take time to tell them that everything is not visible; I’ll show them my scars from my multiple surgeries, and then they're sitting there looking silly in the face. But I feel like, also, I shouldn't have to go around and have to overly and constantly explain myself and try to convince people that I do have certain limitations.

Lauren:  Also, it's nobody's business. This is the thing that always baffles me, why anyone thinks it's their business. But I suppose it's also cultural. We live in a country where people's bodies are policed. So if that's happening, then I guess it's our right to ask people private probing questions??

Shayla: Yes, exactly. Just so bold. Then I get some feedback from my Instagram feed. People say, “Well, you look fine.” Those pictures you see, that's maybe once in a blue moon, where I felt okay to get up, put some clothes on, do my makeup and my hair and take a nice picture, or go out with my friends. You see that one day, but you don't know the 10 days after I take that picture that I'm in bed because I wanted to have one good day out. So I do deal with that a lot, too.

Lauren: So what about this idea of prejudice versus privilege, especially in the healthcare system. We know early on you had that experience of the doctor who dismissed you for being Black. I'm sort of laughing, because it's the most preposterous thing, but I know it happens all the time. You're a woman of color going into the healthcare system seeking assistance for this invisible disability. Can you see your circumstances being different in certain aspects of your treatment if you presented differently … maybe if you were white? If you were male? Would that have influenced the levels of care and belief that people had in you?

Shayla: Oh, absolutely. I just got to the point where I'm able to get pain medication.

Because there was a doctor that told me that people in my community just need drugs to get high. 

Lauren: Oh, my God. 

Shayla: Yes. Yes. 

Lauren: How do you get up when someone throws something like that at you?

Shayla: So that was another thing. I'm not a drug seeker. I'm not trying to get the medication to get high. Like you said, I really do feel like if I presented differently, I probably would have gotten a diagnosis sooner, too. I probably would have gotten the referral to go to Emory sooner because of my pain. Many times I'll go in and it’s, “Oh, you're stressed. School is stressful. You have a lot going on.” I can't tell you how many times people say “you're stressed, you’re stressed, you’re stressed.” Yes, I'm stressed — because nobody believes me. You know what I mean? 

Lauren: But I also am stressed because I'm hurting.

Shayla: Yes, I'm in sometimes debilitating pain. And then another thing, my age. People are, like, “You're too young to be in pain. You're too young.” 

Lauren: Doctors have said that to you? 

Shayla: Yes, doctors and nurses during intake. “Oh my God, you're just so young!” And that really irritates me so much. Sometimes when I go pick up my prescriptions, they say, “You’re too young to be on all these prescriptions.” Why is it anybody's business as to what I have to take? 

Lauren: You’re coming to them for help. Please help me. Umm, that doesn’t exist.

Shayla: Yes. Right. Like you said, prejudice versus privilege, We know there are certain issues within the healthcare community when it comes to women of color, especially young children and pregnancy and things of that nature.

I don’t know if would like to have a child, because I know it's scary. I’ve already seen how I could be treated.

These are really things that I think about.

Lauren: And that's in health care. What happens if you have a son, and he's a Black boy living in the world? These are considerations. Would you say that racial and gender inequity in the health care system, particularly given your experience, is a public health crisis?

Shayla: It is a public health crisis, it is, absolutely. 110%.

Lauren: I don't think I've ever had someone say no to that question!

Shayla: It is. It’s sad, and it’s really unfortunate that it’s something that we say yes to, but it is so true.

Lauren: So let's talk about your advocacy work, because part of that is about changing what this narrative is. Obviously, you've done small-scale advocacy in the sense that you have taken these opportunities to teach people — like that professor who didn't believe you. You're also using social media right now as a platform to educate people about EDS. Talk to us about what that looks like for you, and your involvement with The EDS Society and others.

Shayla: I've started to be more forward on my social media platforms, because I'm a part of the EDS support group in Georgia, in the state that I live in. And they are absolutely amazing. Melissa, who brought me in, she's absolutely amazing. And I've met some really great people. But I know that now when I sit back and look, in the support group, there's not a lot of people that look like me at all. And so sometimes I'm just, like, I cannot be the only Black girl in America with EDS, I just can't. And so that's why I started to be a little more forward on my social media platform. I found a few people or women of color who are suffering with it as well. And we've had a chance to kind of connect and bond and just share that same journey with each other. But I really, really, really, really want to do more. I feel like I'm not doing enough. I feel like I'm not posting enough.

Lauren: Oh, by the time this episode goes live, I'm sure you'll have grown by leaps and bounds because it's baby steps, isn't it. Because you're also taking care of your own health.

Shayla: Yes, that's true. And it’s a lot. And sometimes you're not ready for the kickback that you might get when you post something, because like we just said, people are bold!

Lauren: The Internet and social media have given rise to trolls. And yeah, it can be really tough when you're already dealing with stressors in your day-to-day.

Shayla: Yes, absolutely. I don't know if you saw on my page, but one of my really, really good friends … his name is Brendan Langley and he played for the Denver Broncos. When the NFL had their ‘My Cause My Cleats’, he dedicated his cleats to my EDS, and he did the zebra prints. 

Lauren: I love that!

Shayla: Yes, thank you so much. I was just so overjoyed when he did that. And I was just so thankful, because I’m, like, “You felt enough for me to do something like that for me as your friend.” 

Lauren: It’s also very responsible use of an influence platform.

Shayla: Yes. And so that really kind of catapulted what I wanted to do and bring more awareness. Especially when people say, “Who's your friend?” I don't want to keep being ashamed of this EDS and what it's done.

I've lost friends, I've lost relationships, but it’s also brought some really great people into my life.

And I'm just going to keep sharing and doing what I can to bring awareness. I eventually want to start a YouTube page and document my day-to-day thing — and just see where it goes from there.

Lauren: That's wonderful. Just to swing back into the healthcare system really quickly as well … you've given us examples of things that have worked and things that haven't worked. Would you say, on a systemic level, given the nature of the healthcare system here in the US, what works for patients and what really isn't working? What needs to change?

Shayla: We need doctors that that are not going to just look at somebody and make a judgment. I don't want to say we need doctors that care. Because there are a lot of doctors that care. But that doctor that told me that I could never have EDS because I was Black. And then the doctors who are trying to make it seem like I was a drug-seeker, that just made it feel like they didn't care. They're just there to do their job and check off their checkboxes and move on to the next patient. So we need people that care. And we need access to health care. I feel like everybody should have affordable access to health care. It shouldn't be a life-changing decision to make to go to the doctor, or to do physical therapy appointments.

Lauren: You shouldn't be in debt over something you have absolutely no control over either.

Shayla: No control at all. It's not like we can say, “Oh, let me have this chronic illness. And let me have to have 20,000 surgeries.”

Lauren: Because we’d all choose that, wouldn’t we. I mean, honestly!

Shayla: I'm just thankful that I was able to stay on my parents’ insurance and get what I had to have done. And I'm thankful their employers offered them affordable insurance plans. Because, honestly, if that wasn't the case, I don't know where I would be, I truly don't. Because when you have joints hanging on by a thread, and you need to go in and get surgery, getting it tightened up, it's kind of scary to think about, honestly, it really is.

Lauren: What about ways it's working? Are there any pros to the system as it is right now? You're allowed to have all cons and no pros. This is your experience, you know!

Shayla: Yes, that's true. Right now, my primary care physician is amazing. She is absolutely phenomenal.

She listens to me. That's something I've never had before in a doctor.

She listens, I can email her and say, “This is how I'm feeling, this is a symptom.” I go in, she says, “What's going on?” She’ll give me an update, and she generally shows an interest in making sure she's doing what she can do to make sure that I'm the best that I can be. So, it's truly a blessing for me.

Lauren: When you find the physicians who care and who actually make the time for you and prioritize you, that makes a huge difference.

Shayla: It does, it does. Because ultimately, they're the ones who are going to be your advocate as well when you need certain things. 

Lauren: Especially when it comes to a PCP or a general practitioner, when someone's seeing you first for referral, for example, they become the gatekeeper. So if they’re not listening to you …

Shayla: They do. She was actually the doctor that finally gave me the referral to Emory. I love you, Dr. Baldwin!

Lauren: Out of curiosity, is she a woman of color?

Shayla: She is.

Lauren: And is it at all surprising to you that it took having a physician who is a woman of color to actually get answers?

Shayla: It is, but then isn't. If that makes any sense at all? Because, previously, they weren't people who looked like me. And so I was excited when I went to that appointment and I saw that, oh, my goodness, she looks like me! And I felt so comfortable just baring it all, laying it all out for her and just baring everything to her. And she actually listened to me.

Lauren: And she understood, I presume, inherently, a part of your experience. Well, parts of your experience that include race and gender, that a white physician or a male physician might not have had an understanding of.

Shayla: Absolutely. And I definitely told her what happened! She was floored. She was absolutely floored.

Lauren: I mean, it's dreadful. And I'm glad that you've shared it with us, because this is a reality for patients.

Shayla: It is! And I feel like sometimes when I’m talking with other people, sometimes they don't get it. You don't live it, so I guess you can't really get it.

But my hope is that someday we can all step outside of ourselves and kind of look at things through other people's points-of view and their eyes and try and understand.

Lauren: So, can you give us some tips … I'd love for you to share. You've been on this journey for a while now. You are stepping into more of an advocacy role for others, certainly for yourself. What are the Top Three Things that you would offer to someone as advice if they are going through this invisible chronic illness experience like you are? What are the Top Three pieces of advice that maybe you would have told your younger self, too?

Shayla: Number one is to surround yourself with people who care. Because that's going to be so important. People who care and people who try to understand and be there for you. There have been instances where, like I said, I've lost friendships, Because one day I'll be feeling fine. You'll make plans. “Yeah, girl, let's go out on Friday.” This is Monday; Friday comes, I don't feel well, I can't go. “I can't do this. I'm sorry.” “Oh, my God, you're canceling plans again, like really?” Like, why can't we just y'all come to my house and watch movies inside, and just chill and enjoy each other's company. So I really feel you have to have a solid team of people around you who are going to help you through your good days and your bad days, and not make you feel bad about it. Because you shouldn't feel bad for what you can't control. Definitely you have to have a good, solid support system. My second thing is: always, always, always listen to your body. You have to listen to your body, even when it's making you so angry and still upset and making you resent just everything … listen to your body. Because there's times where I haven't listened, and I paid for it dearly. When you're dealing with chronic illness, you know your limits. And you know when you feel yourself getting to your limit, you just have to step back. I know it's hard to accept it. Trust me, to this day, it's hard to accept those days where I just can't do anything but just lay down. But I feel like you just have to listen and be okay with it. And the third thing is, I struggle with this a lot … don’t try to compare yourself or look at what other people are doing. You have to take your journey. 

Lauren: That's hard because of the social media and advertising …

Shayla: Oh, my goodness, it's so hard! Because I graduated high school in 2013. And like I said, I graduated college back in May 2020. But I have friends, they're finishing up Master's degrees, and so I'm just like, why is it just taking me so long? It makes me so upset, because I feel like I'm not where I'm supposed to be. And everything like that. But like I said, I'm finally, finally getting to the point where I'm okay with Shayla. This is Shayla's journey. And it doesn't matter when you finish. Nobody's gonna say, “Well, how long did it take you?”

Lauren: It took me seven years to get my BA, if it makes you feel any better!

Shayla: Thank you, it does! And so, you know, you just have to be okay with where you are in your journey. And that's going to be easier when you have those people around you who accept you and who are there for you and know when you're having a bad day, who say, “No, we don't have to go out. I'm on my way. What do you want?” That type of relationship. I feel like that's just really, really important.

Lauren: Yeah, absolutely. I think those are great tips. What about one other Top Three list — Top Three Things that give you joy, that you're unwilling to compromise on despite what adjustments you may have had to make in your life around your body? Are there Three Things, be they indulgences or comfort activities when you're having a flare that you turn to when you need to light yourself up?

Shayla: Grey's Anatomy! There is no compromising on that! I've watched it and re-watched it from season 1, 100 times. And I want to keep rewatching it 100 times! 

Lauren: Good taste, good taste! 

Shayla: Yes. I just love it. You said three things … I got so excited!

Lauren: Grey’s Anatomy one, two, and three! (laughs)

Shayla: (laughs) I love to travel. Trips take everything out of me. I know when I get back, I'm gonna need at least a week or two. For real. But I love to travel and I love going to different countries and different places and just exploring and seeing the world.

So that's just one thing I'm never going to stop, no matter how hard it's going to be on my body, or how long it might take me to recover.

That's just not something I'm going to give up. And what's the third one? I don't want to sound boring, but … just my rest time.

Lauren: I was literally thinking, I wonder if rest is on the list.

Shayla: Yes, it is. I’ve never giving it up, ever. I'm that person. We could be in the middle of a party, if I'm tired and I need to go lay down … peace, okay? I’ll see ya later.

Lauren: I love that. We'd be fine at a party together. I'm very much like that myself. So, what is your ask for listeners today? What can they do to support you and the EDS community in the work that you're doing?

Shayla: I just want people to not look at what you see on the outside. I want you to just take a deeper look into people, try to get to know people on a deeper level. Not above the surface. Scratch the surface a little bit more, and just not see people for what they physically appear to be. Because I feel like with EDS, most of the time, it's an invisible disability. And a lot of people who have it, that I know … we all look completely fine. And so it’s just people daring to take a deeper look.

Lauren: I love that. And what's next in your advocacy work, as well as your wellness journey?

Shayla: This vegan journey, I'm gonna try it and I want to see what happens. I've been trying new recipes and new things and so that's definitely something I want to take a little bit more seriously. Although I love hot wings, I think I can find a little vegan something they can do. They can fill that void. And like I said, I'm definitely working on a YouTube channel. And definitely going to be posting more. I have a kind of a deeper thing photoshoot coming up soon, just to show people my zebra prints and my stripes. So I'm excited about that. And being the voice for not only the EDS sufferers, but anybody with a chronic illness. Or a little Black girl who just feels like nobody is listening to her when it comes to her health. I'm going to be out here using my voice and my platform to just do the best I can. And if anybody needs to talk to me, you can. I'm here, absolutely.

Lauren: Well, it's just so wonderful because you're turning your experience around into inspiration for others. And that's really what feeds us on this show. That's what this is all about. And it’s so wonderful that we can have these hard things happen to us, and we can give back because of them.

Shayla: Absolutely. And again, I appreciate you allowing me to use my voice and to share my experience on your platform. I’m so thankful. 

Lauren: I’m so happy you're here, are you kidding! So can you tell everyone where they can find you, Shayla?

Shayla: Okay, so my Instagram is @ShaylaSymone. That's my main platform. And then Twitter is the same, @Shayla Simone. And then Facebook is Shayla Swint.

Lauren: And is there anything else you'd like to share with everyone before I let you go?

Shayla: No, that's it. Thank you so much. I enjoyed it!

Lauren: And as I say to everyone who's on the show, you're stuck with me now. You don't have a conversation like this, that’s this deep, and get to know someone this well without walking away friends. So you've got me now and I hope we'll be able to stay in touch.

Shayla: Yes, you’ve got me. Thank you, and I love your pink hair. It’s so cute!

Lauren: Thank you so much!

UNPD-Hacking-Healthcare-Social4-transparent

Download Hacking Healthcare: A Resource Guide

From messages of empowerment to maximizing time during your doctor’s visit, this is an invaluable guide intended to make healthcare more accessible.

Uninvisible Pod | Design by Nightshift Creative | © 2020