Dominique Viel is the founder of InvisiYouth Charity, a 501(c)3 nonprofit organization that helps teens and young adults around the world with varied chronic conditions and disabilities discover empowering lifestyle programs to live full lives while battling illness. A natural progression of speaking engagements she began as a teen in research hospital treatment centers, she launched InvisiYouth in 2015 after years of self-advocacy, having experienced a lack of patient-centered platforms that served to bridge the gap between the medical and non-medical aspects of her life while living with invisible illness. In particular, her focus is on teens – the “older” pediatric patients often overlooked and misunderstood by the medical establishment. She strives to foster greater communication and compassion between these patients and their medical teams, and to encourage teens to find outlets to live creative, fulfilling lives in spite of – but with reverence to – their disabilities.
Key links mentioned in this episode:
Join us as Dominique shares…
- that she lives with both visible and invisible illness in the forms of: RSD (Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome/CRPS), scoliosis, tachycardia, and undiagnosed EDS (Ehlers Danlos Syndrome) with hypermobility
- that she first got sick a decade ago (right before she turned 16), and RSD ended her competitive tennis career
- that, like so many patients with chronic illness, she experienced the “revolving door” of specialists, tests, and procedures in the early stages of her diagnosis
- that she struggled to maintain and keep balance in her life as a high school student with her mounting medical conditions
- that she taught herself to be ambidextrous as a result of RSD/CRPS
- that she was apprehensive to try acupuncture and cupping, but had great success with these therapies for managing symptoms of RSD/CRPS
- that she struggled with chronic illness visibility in college, and transferred schools in her freshman year because of a lack of accommodation
- that she learned very early on to be her own health advocate, and had an additional early advocate in her mother, who is a nurse
- that she adapted quickly to new career options because of her physical limitations; her narrative came second to her body’s needs
- the grieving process of health changes, which accelerated her maturation process because of discussions about mortality
- that she had no community in the invisible illness world until she launched InvisiYouth at the age of 22; many of her friends either backed off or struggled to understand her conditions because they couldn’t see them
- the importance of being proactive about your health, rather than reactive
- that she’s been unofficially diagnosed with EDS – and not officially diagnosed because of the cost and limitations of testing
- that when she was younger, her lack of ability to explain her conditions made her feel like less of an authority on her own body
- the lack of disability representation in the media, and how important it is to expand our understanding of representation
- that the name of InvisiYouth was rooted in her feeling of invisibility being in an older, often misunderstood youth demographic
- that for the last 7 years she’s speaking publicly at the Children’s Hospital of Philadelphia, addressing doctor-patient communication and responsibilities with particular reference to the teen and young adult community
- that she structured InvisiYouth to work functionally around her disabilities
- how she prepares daily and weekly to manage work and life around her symptoms
- her advice for those with disabilities seeking remote work
- the importance of meaningfully asking our friends “how are you?” and seeking a truthful response
- that chronic illness, success, and happiness are NOT mutually exclusive
- the importance of celebrity disability awareness, and how these individuals can put a face on invisible illness for the masses
- that she’s now been to 47 doctors, and very few ever asked about how she was feeling – which has impacted her goal to empower both patients AND doctors to better communicate together
- the importance of owning one’s medical adaptations
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Lauren: All right guys, thank you so much for joining us today. I’m here with Dominique Viel, who is the founder of InvisiYouth charity, which is an organization that provides support for teenagers and young people who are living with chronic and invisible illness. It was inspired by her own experience as a teenager with invisible illness; and Dominique is going to tell us all about that. She lives with RSD [Reflex Sympathetic Dystrophy], which is also known as CRPS [Complex Regional Pain Syndrome]. She’s also got scoliosis, tachycardia and undiagnosed EDS, which is Ehlers-Danlos syndrome, for those of you who aren’t familiar. So, Dominique, thanks so much for joining us.
Dominique: Thank you so much for having me. And for that awesome intro … I appreciate it!
Lauren: Oh, my gosh, it’s my pleasure. It’s so wonderful to have people on the show who are also working in the advocacy space. And I can’t wait to hear more about all of your experience with that. But just to get us started, why don’t you tell us about when and how you first realized that you had invisible illness?
Dominique: Sure. I can take you back. It’ll be a decade now, since I’m 26 and this happened a few weeks before my 16th birthday. I was a competitive tennis player for a little over eight years. So that’s pretty much about four or five hours of training, about five days a week for those extended periods of time. So naturally, as a competitive athlete, you put a lot of strain and wear and tear on your body. And right before I turned 16, I got injured in off-season training with one of my coaches – in my left hand, through a tennis injury, which is my dominant side, as well. And it sort of felt like a pop within my joint when I was doing a shot on the court with him, and it became like this engulfing burning throughout my hand. I always say that the last time I was really able to play tennis was from that moment. I didn’t obviously know that at the time, but that’s where it would lead. My mom is a nurse of over 35 years, so right away she was able to examine my hand, and called my orthopedic doctor at the time. And he got to see me right away and did X-rays — and thought it was a case of tendonitis, and sent me off with a script for physical therapy right away. And I always felt really ominous about that, because as an athlete who had gotten injured so often, I had had tendonitis about four times prior to it in different parts of my body. And I knew that this was something visibly that looked different than what I had had before. Fast forward a week … and clearly I was right. My left hand at that point was about three times the size; it was navy blue all over. Not a very pretty picture! That’s the very visible part that happened, for sure. The visible sensation was the most minimal part of it; physically, it felt like the best explanation. I was an English major in college later on, so naturally, my language is more flowery … but …
… it felt like my hand was being crushed with burning coals and being pushed with barbed wire consistently. When I was trying to put clothes on or moving my fingers; I was having a really hard time with it.
So when I went back to my doctor, he was confused and did more tests and said, “Oh, I think this is RSD and we’ll send you to more physical therapy.”
Lauren: Now, can you explain RSD?
Dominique: Yes, absolutely. So the medical terminology is Reflex Sympathetic Dystrophy. It’s also known as CRPS, which is Chronic Regional Pain Syndrome. So it’s a type of condition which affects your sympathetic nervous system — which is the sensory level of your nerves, which is where you feel pain and touch. And like all nervous systems, it goes through a circuit. So when your sympathetic nerves have with an injury, it goes through the response of knowing there’s an injury, the physical response of injury — and then it completes the circuit by healing and it goes through that.
So when you have RSD, you provide a gap in that circuit. So it goes through injury and goes to connect for the healing process — but there’s a gap in that circle, so then it reverts back and continues to re-injure your body. At that point, it assumes that there is still an injury there because that damage has been done.
So it can range from just typical nerve pain, burning sensations, muscle spasms, vascular damage — which is what I had, which caused the very pronounced bruising — temperature changes between burning and freezing that’s very noticeable to the touch, loss of mobility, and all of that. So it can really stem in terms of how it is for different people. I was 15 turning 16, and because my doctor, at that point, wasn’t very sure what was going on, I began the revolving door of doctors.
Everybody had their colleague who was a specialist in a different type of -ology, and wanted me to be tested by them because they felt there was this underlying condition.
I was going through physical therapy for three or four hours a day after school. Because I was very adamant; I wanted to try and stay in high school at that point and not have to leave. So I was going in and out of class, being there for part of the day and leaving or coming back in after doctors and tests and procedures. And more doctors I would go to said, “Well, we know you have RSD, but there’s something else here because you’re not responding to physical therapy any longer.” It was getting considerably worse and worse.
So at that point, I had them trying different tests to help relieve the pain and the muscular spasms that were happening, because at that point, I was starting to lose mobility in my hand because the swelling was so pronounced. I couldn’t even bend my fingers. So to stay in school, I taught myself to be right-handed. Now it’s a fun party trick: that I’m ambidextrous; but it was strictly out of necessity.
I had nerve blocks done, which are called stellate ganglion blocks. So they would take a needle through the base of my throat and thread it down my left arm to block off the sympathetic nerves. So I had two of those done; neither of those were successful. And if you have RSD, that really is one of the biggest ways of gaining relief. I had less than 48 hours before my symptoms came fully back. So at that point, my doctors were grasping at straws because they didn’t know why it was months and months, and there was no return of success.
On my end, staying in school and having to bounce between doctors and school at the same time, it was that medical struggle of trying to maintain both worlds at the same time.
And I and my mom, and the rest of my family as well, noticed I had started to become more shifted; my shoulders looked hunched. I had scoliosis growing up; my sister and I both do — just minor scoliosis, which a lot of young people have. And so we assumed that it was probably just becoming more visibly pronounced. I went back to my scoliosis doctor. Unfortunately … at that point, I was only five feet tall. So that was unfortunate on my end, and I had fully grown at that point, unfortunately, as well. My growth plates were visible on a scan, so they knew I wasn’t going to physically grow any more … so my spine shouldn’t have shifted. But I had a 14-degree curve, and when the doctor did an X-ray and brought it in, he put them side by side and lit the screen up. He looked very confused because I was 34 degrees. Five weeks later, I went to a spinal specialist and I was over 55 degrees within five weeks. On that scan, my hips actually started to become off-centered. So as my high school friends joke, I had an official gangster limp walking around, because my legs were about an inch off from each other. My spine would sort of curve into my shoulder and curve out. I had spinal correction and fusion surgery, which I did leading into my junior year of high school. So the majority of my spine, T2 to L5 — for all the people who’ve had spinal surgeries, you know where all that is! – I have titanium rods and screws through the majority of my spine for that. So that surgery went flying colors. At that point, I had more testing done … assuming that I might have Marfan syndrome, something in that realm. Everything came back negative. And then, right before I started my junior year of high school, after my surgery, I woke up one morning and I had these red patches of bruising on my left foot. And the pain was very similar. At that point, I assumed that the RSD had gravitated and moved to another part of my body. Within a week, I wasn’t able to fit any shoes, even flip flops, on my left foot. It was navy blue, purple. I couldn’t put any weight on it; it was frozen.
The temperature discrepancies between my limbs at that point was about 25 degrees — which is just unheard of. It was colder than ice, touching me on my left side, always.
And so when I went to my internist at that point, who was Dr. #21, he knew right away. He said, “Well, with RSD, if you don’t get proper treatment, it can start to spread and just gravitate to other parts of your limbs.” So at that point, he took my medical chart home and was sort of researching through it and talking to his colleagues, and assumed I had a connective tissue disorder from everything that was going on with my spine shifting. And I was having random stretch marks on my body, which nobody knew or could equate to. I didn’t have any dramatic weight loss or gain through that whole process, as well. So he suggested I go to the Children’s Hospital of Philadelphia for genetic counseling. And through those connections, the team over there at CHOP then led me to their RSD specialists they have there, and got me an appointment with him, instead of going down the connective tissue route to try and resolve the RSD. By that point I was a senior in high school and it had spread into the left side of my neck and head as well. So, cognitively from light and vision, I would lose my vision on the left side and black out; sensory sounds would be like burning; I was starting to have a lot of brain fog. And so I would be listening and forgetting things. And my left side of my neck and head … if I turned sideways, it was swollen going up into my head.
So trying to take SATs and doing all of that at the same time … I’m trying to take testing, and I didn’t have accommodations for that testing — just because that whole process is very challenging to gain, as well.
So I did the majority of the writing portion of my SATs right-handed — so that was interesting. That was where it came in handy! So, I ended up going through that whole process with the doctors at CHOP, and they realized that my current physical therapists and doctors were only really treating the muscular side of RSD and they weren’t actually doing proper physical therapy for me all those years. At his end, he sort of disregarded worries about there being connective tissue and something else till later. You have to be in proper physical therapy treatment for someone with neuromuscular issues and nerve damage. That was about two-and-a-half years after my injury. And so I went through that with my physical therapists at home — they were my Bonnie and Clyde, the two of them, as I called them. They really took me under their wing and learned the whole program; they spoke to the physical therapist there. They would have me putting things in ice buckets, and doing pinching exercises with towels, and rubbing ice cubes on my limbs for sensory reversion — so my nerves would realize that those weren’t acts of injury; it was just a normal sensory issue to retrain your nervous system to complete the gap again. I was going through that whole process …
Lauren: You must have been applying to college at that point?
Dominique: Yeah, I had been in physical therapy about two-and-a-half or three years. My health insurance told me I had plateaued, so they stopped covering my PT at that time. So while my mom was working with the health insurance [company] to try and get it back …
… I had a guidance counselor in high school who had his own health struggles and he suggested I give acupuncture a try, to help with the pain relief. I was a little apprehensive, but at that point, I really didn’t have any other options. I was going to go for anything. For me, it was sort of the best nervous decision I ever made.
The acupuncturist I went to researched RSD. She gave me multiple sessions, testing needles on different parts of my body, to how I responded to different types of needles. And she really went through my physical chemistry of how it would work with my body, and really tailored her acupuncture to what my body could handle and what I needed. Not curing the RSD, but helping with the secondary side effects of bruising and swelling and muscle spasms, so that she was able to kind of relieve the second end of everything that was happening with my chronic illness. It was really wonderful. Because it was integrative medicine, my doctors often rolled their eyes a little bit and said, “Well, it won’t kill you. So go for it.” And after a couple of months, I was seeing the swelling in my legs starting to go down significantly. I was having more range of motion; the pain was starting to become more manageable on a day-to-day. So then by medical team became proactive with it, and brought it into my medical treatment plan. So I was doing home physical therapy while doing acupuncture, and cupping as well, for releasing muscle spasms.
They were for it because they were able to see it physically. As I said, I kind of straddled visible and invisible illness …
… just depending if my vascular system had ruptured, and the nervous system had ruptured and I had bruising, it was very apparent what was wrong in my limbs. But on the other side, having brain fog, or losing my vision, or having spasms in my hand … it was not something somebody could see. So the doctors were able to notice that my functionality was better. For me, it was a benefit to bridge both of them together, and at that point, there was nothing they could do but be supportive of pulling the two together to help me through that process.
Lauren: That’s pretty amazing.
Dominique: Yeah. At that point, it was probably about four years into it, and I ended up switching to go to a different university. Like many young people with a chronic illness, I was tired of being somebody with a chronic illness. So at 18, I said I’m going to go to a different university. It was further from home. I kind of didn’t think about stopping all medical treatment; I just went. And I didn’t have a good living situation.
The university wasn’t very supportive of my health condition because they couldn’t see it. Even though I had medical reports from doctors and got accommodations at the school. They didn’t see the issues, so they weren’t accommodating to it. I had made about a 40% recovery, and that reverted straight back within two weeks.
So I made the decision. I spoke to my doctors, my family. Originally, I had gotten accepted to Saint Joseph’s University in Philadelphia. I reached out to them and they said, “Well, she can come the second semester and we’ll give her the full scholarship she had, if she’ll transfer and just wait a semester.” So I left within two weeks, went back home, and luckily, because of being close to home and also being in the Philadelphia area, I was able to maintain my health treatments and go back and forth between school and staying, then going home and having acupuncture and everything. As I sort of phased out of what was my new normal, as I said, of being medically adaptive. The University was super accommodating.
I was very upfront with all of my professors the first week they met me … because a lot of times they couldn’t physically see what was wrong unless I was wearing KT tape or I had a limp or something was going on … especially from a neurological standpoint, they really had no idea why I would forget conversations while they were happening, or why I would be very sensitive to light or sound in the middle of class and get up and come back in because it was too much pain. I was very much an advocate on that end. That’s something that came from my mom being a nurse; she taught that to my sister and I very early on, to be the voice with every doctor. And so I said I’m going to advocate for what I need … having recording devices in class and other people taking notes, having extended time if they were written exams, because naturally my hand would lock up so I would have to switch to other hands or type exams instead.
They were super.
Lauren: That’s incredible that you were able to bypass that very steep part of the learning curve of chronic illness. It hits us, and we don’t even know which way is up or who to talk to, or how to get the accommodations we need. And the fact that you already had that knowledge, that insider track because of your mom … I think that’s just incredible.
Dominique: Yeah, in my personal life, she is my best friend, my better half as I always say. So on that end, it was having that trust there. But it was a benefit because a lot of young people will go into a doctor’s office or be with a professor or a boss, and they don’t have that second person there to look to. If they’re confused about a medical diagnosis or treatment or an option. I knew I didn’t have to ask the doctor right away, I could look to my mom. And if she nodded her head that she knew what was happening, I could ask her later on if I forgot something. There was somebody there who could remind me, so I had that medical security net. So for me, I felt I had a security team behind me, if you will, allowing me to be more vocally proactive — which is not a luxury that many people have.
Learning that advocacy, just in general and very especially in university or when I was looking for jobs and when I built InvisiYouth, I was very vocal about what I physically needed.
And if you had issues of not seeing something medically, I would just explain it to you, how it would affect your body medically.
Lauren: When you would take the time to explain things to people, which requires a lot of patience, it makes you a bit of a saint, I would say! But was it not a traumatic experience having to sort of, re-live all of the symptomatic issues all the time?
Dominique: No, definitely. I think, on my end, going through it as a latter teen into my early ‘20s, and definitely from an emotional standpoint, I didn’t shut that part off, but just focused and sort of took everything step by step. I sort of disconnected emotionally from my own health journey, just to accept everything moving forward … the career paths that I wanted. Very quickly I wanted to try and get scouted for university and play tennis professionally in my ‘20s; that dream had to die right away. And then I wanted to do philanthropic journalism and travel with NGOs, but medically that wasn’t going to be helpful for me to be in a third world country and get sick and not be able to go to a hospital. So I built a different … my story felt very second to me. I felt like I was just explaining the narrative of what it was.
Lauren: And disassociating.
Dominique: Yes, but I always say there’s two sides, too. If you go through the emotional process while it’s happening, it’s one of the worst types of grieving because you have to grieve your old life. For me, I had an injury. Somebody else could have an an illness.
But if it comes on later and it’s not something you’re born with, you do have a before and after. There is a memory of physical health and being “normal” like everyone else. So you have that memory of what it could have been like.
I had to go through that process in my later teens and early ‘20s, not accepting things were going to be different, but really kind of grieving my health and moving forward and being proud of the new decisions and new opportunities I was going to have to have. But that’s a very long emotional process within yourself, with other people around you. For me, having a chronic illness as a teenager, it accelerated the growing-up process very quickly. There were conversations of: You could have a type of terminal cancer, or this diagnosis, this could be fatal.
It was that mortality conversation constantly being brought up. So it was important for me to focus in and have to handle everything — so you grow up very quickly.
So when I hit that new normal, I was able to then discuss my health with other people. But I did make it, like you said, a disassociative narrative because I would explain what I was comfortable publicly saying. But then there was a different emotional side of it. My family and my very close friends were able to know different parts of what I personally had gone through, bad experiences within the medical community, more bad than good, unfortunately, on my side of it.
I always say, I never met or spoke to anyone with a chronic illness or an invisible illness until I launched InvisiYouth when I was 22. Nobody.
I had only healthy able-bodied friends. So I had no one who understood what I was going through and a lot of my friends disconnected immediately. They didn’t understand what was going on. I didn’t have a traditional illness like cancer or diabetes, which is more media-friendly and it’s more conversationally known. A lot of my friends backed off because they didn’t know what was happening. A lot of my other friends made it the butt of a joke because it was something visibly they couldn’t see. I’m naturally a very sarcastic person. My comedic skills got heightened when I got chronically ill.
Lauren: I cannot tell you how many people on this show have said: Develop a sense of humor. And how important that is.
Dominique: Oh, 100%. My humor is massively sarcastic and dark, and people in the health community? It’s flying colors. My healthy, able-bodied friends say, “Can I laugh at that?” Always! But from the invisible illness side, I always had to be trained to explain everything to people, because there was never a moment of someone going, “Oh, I get it.”
I never had anyone get it. So for me, it was constant explanation. I had to be the verbal … I always say it’s proactive with your health, not reactive. When it’s a visible illness, or visible disability, you get to be very reactive because everyone sees; you have to react to that response. But when it’s invisible illness, you have to be proactive and constantly verbalize [that] this is what I can and cannot do. This is what’s wrong inside my body. So there’s just different forms of how you get to communicate with people.
Lauren: I want to definitely go into talking more about InvisiYouth and how you found community within the work that you created for yourself. But before we get into that, there’s still half of your medical journey that we haven’t covered. Can you tell us about the rest of your medical chart?
Dominique: Yes. I went to one doctor one time with my medical chart — which was quite large, multiple inches. And there was another patient next to me who was an older woman, 80 or 85. She saw my chart, which could eat her chart multiple times over – it was so big. And she looked at her little chart and put her hand on mine and said, “Oh my god, honey, I am so sorry.” I just laughed and I said, “Well, I don’t know what size mine is going to be by the time I make it to your age!” And she laughed. I said, “They’re going to need to give me a whole shelf at that point. Name a room, give me a shelf.” But yeah, when I graduated from college, and I was about 22, 23 …
Lauren: This is when you created InvisiYouth.
Dominique: Yeah, around the same time, ironically. I think because I had gotten so used to my new normal. I had nerve damage affecting my left side. There were small things popping up throughout those years that occasionally would happen. I had muscular spasms in my throat; if I was trying to eat different things, my muscles would irregularly react and they would lock around food and I couldn’t breathe. And then I would have to wait until my sensory nerves knew, ‘Oh, she is trying to swallow something.’ And then they would open up. I would have bouts of tachycardia, where I would be laying in bed, and I would get up and I was immediately winded without moving.
Lauren: Can you tell us what tachycardia is?
Dominique: It’s like an irregular heartbeat. So basically, if I was sitting, I would have a normal resting heart rate. I would sort of turn my head to one side, and I would go from a resting of 80 to my heart rate jumping to 120. And I wasn’t physically moving. It would happen occasionally throughout college. I noticed it more often when I was being more physically active and testing my physical limits at different points with physical therapy and all of that. And it would build up from being something that would happen a couple of times a month to a couple of times a week, to then more regularly as time would go on. My hyper elasticity … I was always very double-jointed and flexible.
Lauren: That’s definitely Ehlers-Danlos.
Dominique: Yeah, I can dislocate my joints in my wrists, I can pop my shoulder muscles in and out. My IT bands are too long for my body so they snap back and forth, so it looks like my hip joints pop in and out but it’s my IT bands snapping back and forth just with movement. I can twist my legs backwards and all that fun contortion-y stuff and I have no pain. It’s a fun party trick when you start pretzel-ing with your arms. They’re like, “What are you doing?!” My mom and my sister are both very flexible. I just thought I was more hyper-flexible than everyone else, and going through my illness … Ehlers-Danlos Syndrome is a type of connective tissue disorder where there’s a hyper-elasticity in the production of collagen. Your limbs and your muscles are very flexible. So my jaw can dislocate. And my fingers can bend all the way backwards, and all of that. Some people have hyper-elastic skin, which can pull very far; mine does not. There are different forms of EDS. So I would be sent to a connective tissue specialist, and for reasons of insurance coverage or how they did testing, they said, “Well, most likely you do [have EDS], but we’re not going to go through the testing.” Or, “We test your stretch marks; it’s going to show it’s a stretch mark.” I would go through that whole system. The big thing with EDS is there’s a cardiac vascular version, where if your vascular system is hyper-elastic and has collagen, you can rupture.
As one of my doctors so bluntly put it, “Oh, well, you could just have a spontaneous aneurysm and die, but we can’t help you then.” That was how one of my doctors explained it to me!
Lauren: Doesn’t that really highlight the lack of preventive care in our system?
Dominique: Yeah, and the bedside manner discussion!
Lauren: We’re not going to do the testing; we’re going to assume you’ve got this going on. If you get the aneurysm, then we’ll know for sure, but no discussion of, “Let’s try and prevent it.”
Dominique: Yeah. Especially with EDS, if you’re going to be more proactive whether you get the proper diagnosis on paper or not, the cardiac route is getting tested with EKGs and echo[cardiogram]s and all of that. When I was about 19 or 20, I started going to a cardiologist regularly — as an annual checkup, just to make sure everything stays fine from the cardiac perspective. At this point with my hyper-flexibility and all, I’m able to maintain around it, wearing KT tape and braces and working out in a capacity [in which] my physical therapists have shown me to use my body. I don’t run on treadmills because my hip muscles dislocate, so I use water rowers and elliptical machines where I have more physical control. So that was helpful in terms of the EDS un-diagnosis.
I guess from having an invisible illness that wasn’t diagnosed for a long time, I found less power in gaining the term for myself. I felt more power in the proper medical treatment of just helping the side-effects and the symptoms.
Lauren: That’s interesting, because that’s very different from a lot of people’s experiences.
Dominique: Yeah. When I was younger, I needed that sense of community and explanation. When people said, “What’s wrong?”, I was always saying, “They don’t know.” And that’s not helpful in conversation. When people are seeing you’re missing, and you’re in hospital — and you physically don’t look sick and you can’t give them a rational explanation. It just adds to everyone’s confusion.
You feel like less of an authority in your own body.
Lauren: That’s an amazing way of putting it.
Dominique: Yeah. And as it went on I, I felt that because nobody was giving a proper diagnosis and I had never met anyone with chronic illness, and there wasn’t a community for many years; I started to feel less and less that it was important to get the diagnosis. As long as you’re treating it, from the life-altering side of it, that we’re taking preventive measures — that was good enough for me, and I can build a life around it.
Lauren: Yeah, when you were younger you needed the name, but as you gained experience and wisdom, and accelerated the “adult-ing” process, you were able to refocus on what you needed.
Dominique: It was a lot of sympathy and pity, it was a lot of, “Poor you. I’m so sorry.”
People feel the need to constantly apologize that you’re having to live your life the way you live it. Where, I was very vocal. So I would then come back at my friends, and say, “Why are you apologizing to me? I didn’t do anything wrong. This is not my fault. It is not your fault. You didn’t whack me with the tennis ball. It was all there. It was dormant.”
Lauren: I think it’s fantastic. Because if more of us were able to have that attitude before stuff like this happened … In a way, it sounds like your ability to cope, and to go through that grieving process and through that discovery process with your friends and family present, has been … I don’t know if “easier” is the word for it, but there’s been a grace to the way that you’ve been able to navigate through it. Because you were already prepared to tell people that you have no pity for yourself, so why should they?
Dominique: I think as I started getting older, and because I sort of treated my health as a secondary part of my life and my medical life, and I tried to mentally separate them — which obviously you have to deal with later on because they go hand in hand and I built a nonprofit about it — naturally, it became part of my day-to-day. But to help myself cope through everything, I looked at everything very logically. So, if my friends were starting to pull away, I was then having the logical response of going, ‘Well, in 10 years, are these the same people I would want to have a friendship with, to actually invest the little energy I have worrying about why they’re upset that I didn’t show up to this event, or go to this game, or do these things? And if that’s what’s upsetting them, I don’t want to invest the little amount of healthy time I have in this.’ I was becoming very logical, saying, ‘Well, if this is how you’re going to treat my chronic illness, it’s not worth my time on either end.’ Going, ‘Well, this is why people are not very understanding and this is how things are.’ Looking back now, having the hindsight of 10 years of having an illness, it was just sort of trying to build the emotional buffer of not being offended and being upset by people, just trying to build the buffer around you.
Lauren: It’s also a functioning mechanism, because we have to protect ourselves, and, as you say, protect that precious energy because we’ve got fewer Spoons!
Dominique: Exactly. I had no TV show besides Grey’s Anatomy, on one episode where they shouted out EDS one time … there is no visible representation, much, of invisible illness. Within the last three or four years, especially since I launched InvisiYouth, I’m seeing more, in the public eye, discussing physical health and mental health in the invisible illness community. It’s been more prevalent, but it still doesn’t get the attention that it deserves. There’s no accurate representation. I had nobody to point to, to my friends, and go, “Watch this show. Look at this.” There was nothing. So I had to become a medical encyclopedia, which on some days … I would just look at my friends and go, “Just Google it.” Which I know is the worst. But I knew: I have no time. I’m too tired!
Lauren: Speaking of InvisiYouth, tell us how that came about? Because it sounds like you already had an interest in journalism and philanthropic work, and that you didn’t have the community that you wanted as a teenager. And so you created that for other people. Tell us about what InvisiYouth is, and how it’s tied into your journey?
Dominique: InvisiYouth is a 501(c)3 nonprofit organization that works with teens and young adults around the world who have all types of chronic illness and disability.
So we work across the visible and invisible illness spectrum, and then physical and mental health. Since for many people, for pretty much most people, mental wellness is affected by physical illness; they go hand-in-hand.
While some people don’t remember that sometimes, it helps us help. We do a lot in terms of lifestyle support so young people can have the tools, virtual programming and fun events, that they can have to thrive with illness. So for us, it’s not waiting for health or waiting for the cure. You have to live tomorrow with your illness. For us, we want different ways of finding empowerment in yourself while you’re working on your own health recovery in every capacity. It will be four years in June since we launched. Obviously, the name InvisiYouth came from the personal perspective of having an invisible illness, and being a teenager and young adult straddling the pediatric adult healthcare timeline and transitioning throughout my process.
The older youth demographic is very neglected, and they are quite invisible.
They’re not the kids in the St. Jude’s commercials, because I joke to our teenagers all the time: “You guys aren’t cute enough!” They always tell me: “Dominique, we are not cute enough to be on the poster.” And I’m, like, “Well, you’re on our website!” And they say, “That’s because you like us! And that’s why — you’re one of us!” They’re not old enough to be in the typical health care system commercials you’ll see, as well.
Instead of them feeling invisible, I wanted them to feel invincible with their health and have that journey.
While I was at St. Joseph’s University and I was a patient at CHOP, as you can hear, I’m very chatty … so my doctors all knew that I was very proactive. They suggested, maybe we can test you as a public speaker for the hospital and at new employee orientations — which I did. I still do. That’s about seven years now. So I speak to hundreds of their new employees all the time about the patient/doctor relationship, especially for young adults. It’s gotten me opportunities to be a stakeholder on grants that have been published in research studies where I work with older youth for that demographic, so I get to work with a lot of older youth who are in the research grants, and I get to be their spokesperson to the research team. Because a lot of times, people forget that there are actual patients that their work is going to. So, trying to bridge that conversation. I was in multiple hospitals, outpatient, physical therapy, outpatient. I was never in one physical place getting treatment — which is how it is for most people, especially with invisible illness. Because a lot of times, it’s rare disease; and you’re bouncing around to so many specialists and places. So for me, I knew I didn’t really have one hospital as a home base. And I was seeing so many teenagers while I was there, bouncing in and out, and always hearing doctors asking the same types of questions and saying to me, “I don’t know how to talk to my teenage patients. They’re always on their phones. What do you do when they ask me about why all these medical accessories aren’t attractive enough for them to wear? Why they’re not wanting to do different types of treatments while they’re in school?” Or, “I want to take them out for six months, but they won’t do it. Why are they not agreeing to different things?” I was hearing the same questions. And I was mentioning it while I was speaking with some of my colleagues. And they said, “Well, you’re going to school now …” (I have a Bachelor’s of the Arts in English writing and international relations. I wanted to work with non-governmental organizations like UNICEF or refugee commissions from Stateside.) So they said, “Well, why – instead of working for a charity, you should just make your own at this point.” I was looking for other nonprofits at that point and thinking, there has to be some charity out here who works with the young adult community — not in one illness, but with all of them.
Because I didn’t have a proper diagnosis at that point, so I wouldn’t be fitting into a charity’s bubble with a specific illness. I was thinking, there’s nothing here helping with the non-medical side of life with chronic illness. And I kept hearing, “Well, why don’t you start your own?” So that sort of became my mission.
As a senior at my university, I liked to joke to my friends that they had very relaxed and fun senior years, hanging out with each other on weekends — while I was driving back and forth, meeting with accountants and lawyers and building InvisiYouth my entire senior year. We launched a month after I graduated from college. Within the first year of having health transitions, we did a whole restructuring of the charity. Because I said, if I was going to run this as the founder and have people work with me as consultants … and young people come into the charity and our Global Brand Leader Program … and noticing that our reach was going to extend outside of the States very quickly, as we did … it was important that the charity be malleable to me as the owner, and would flex and flow with me. So if I had to take a step back physically from things, it was going to run its course without me in some way. After our first year, we really did a whole restructure, and built everything virtually so that we were able to host fun events for free for young people inclusively, to bring friends and siblings and their boyfriends and girlfriends with them. We do InvisiYouth meetups in the different cities that we’re in, and then we also have virtual programming so we can have downloadable resources. On our website, we have spotlight writing; and we have our leadership program, which is our Global Brand Leader Program where you get to work with me and my team, in advocacy elements through social media marketing and advocacy campaigns, and then also doing fundraising for the organization. Now we’re across the United States, Canada, all of the United Kingdom, and Australia as of this year, as well. I always say it was the young people jumping in right away. Because they’re so hungry for it. They’re able to connect with one another on social media so well, that when we stepped in as an organization and explained, we’re the non-medical side of life that you’re living, it’s everything that the doctors aren’t telling you — that’s us. And lifestyle management. And young people with different types of illnesses were able to say, “Well, I have Lyme disease,” and then, “I have this cardiac mutation.” But they both did sports therapy because talk therapy wasn’t their option, and then were able to connect with one another in that way.
For us, it was really important that, especially in the invisible illness community, so much of what we do go through socially and emotionally is very similar. Even though the diagnoses might be different. Having the charity represent that under-represented community for almost four years now has been the best thing — getting to work with some of the most deserving young people ever, because they know how to adapt and grow based on their health. They’re the best people to work with.
Lauren: Now, it sounds like you’ve got a very full plate.
Dominique: Oh, no! (laughs)
Lauren: This comes up all the time with my interview subjects … I want to know how you balance work and life, and what a day in the life of Dominique looks like and how you’re managing these ups and downs with the ebb and flow of your work.
Dominique: Absolutely. That’s why it was a big thing when we took a step back with my board and with our consultants — when my health started to shift again in my later 20s. I’m able to work. I work part-time in the publishing industry as well. I like to say that because building the nonprofit, I wanted to make sure that 100% of every donation, and funds that are raised and sponsors that we get, are going to our programming, our leadership programming, and our events. And since I’m young enough to do that … I needed to have a second job to pay the college loan, as I joke. I was very fortunate that the literary scouting firm that I work for in New York City … we have a video podcast series, InvisYouth Chat Sessions, and that records in New York City as well in the podcast studio that helps sponsor us, which is amazing. So I’m in the downtown New York City area every week, but my boss there knew about my health and had a meeting with me one day and said, “Okay, I’ve heard you have this chronic illness thing, I’ve read about it …” Because I was interviewed a few times and so she read about my health. And she said, ”I don’t really understand what is going on medically, but what are you physically capable of and what are your barriers?”
Lauren: So she actually brought it up with you? A lot of people hold this information back and don’t share it.
Dominique: Yeah, I’m very fortunate. I said, “This is what I’m comfortable sharing, and the rest of it isn’t really going to affect my work. These are some scenarios that could happen.” So we made my work flexible, so I can work from home a few days and I’m in the city a few days. I’ve worked with her three or four years now in the publishing industry. And I have the ability of working from home — which I know is so important for so many young people, being able to find jobs that have a virtual aspect to it. Because a lot of places don’t publicly discuss that in terms of employment. You have to dig quite a bit. So I was fortunate that my boss is also a young female business owner. And she was very supportive, knowing that I had just launched InvisiYouth and so she knew that on my days not with her I’m working full-time. Even when I’m commuting into the city, I’m on emails with our British community and our Australian community. And when I’m coming home, I’m communicating with Vancouver and California. For me, it worked out, structuring my day. But when I was having to be physically active, you learn — especially with an invisible illness that affects more multi-organ systems — if you’re going to physically exert your body, how can you shift the week? So I have to check every week: Am I going to a lot of meetings? Am I filming a podcast in the city? Where am I going for different things? So, sometimes I’m working in my home office, sometimes I’m working from my bedroom, and that’s just the easiest way for me to do a lot of our work.
That was a big reason why I wanted to make sure that the programming was very virtual, because I was hearing from so many of our young people that they were homebound at different periods of time — they’re in and out of hospitals, or they’re doing a lot of virtual work for their jobs.
And so they said, I can’t get involved in charities because it’s not tangible for me all the time to be physically in an office or to be able to go to an event or tape some programming. I wanted to make sure that when we built the video podcast series, it’s filmed as a visual on our YouTube and it’s audio on other podcasts — so that the visual and hearing impairment community had different options. So that even some people who were more homebound, they could watch and feel that social connection between myself and our guests, watching us communicate with each other. So there was that social interaction. But for me, my day-to-day really varies. I do what I say is my mental and medical check-in every morning. I wake up and sort of figure out where I’m at: baseline. Because sometimes my cardiac issues are the biggest issue. Other times, it’s way more brain-fogging and nerve pain from migraines that are more hemiplegic and on the left, so I kind of know, ‘Okay, I’m not gonna be able to look at a screen much today. So let me do these sort of projects.’ I schedule everything out based on how I check in that morning. And that’s where I’m able to multi-task in that way. I say Google reminders on my phone are my best friend because I brain fog and forget half the time that I’m supposed to do something! If I could have stock in Post-its, the charity would be in 100 countries!
Lauren: Now that’s a really good point! And it’s interesting that you’re bringing up this idea of entrepreneurship as well, because much as creating a business is no easy task, for those of us who are determined enough to do it, it really does enable those of us who need more work accommodations to really create our own work environment — whether you’re doing something on the charitable side, or even if you’re running a for-profit business. If you’re able to put the energy into creating your own work, using that as your platform, that’s really the way to do it. It’s great if you can find employers who are able to make accommodations, but when you can create it for yourself, that’s amazing.
Dominique: Yeah, and I always say, with employment, especially in the invisible illness community, you do have a double-edged sword of the luxury of not explaining your health to people. So you can create your safety net of community of co-workers in that world, and build parameters like I’ve done with my other job in terms of what they know I’m capable of, and the different ways I could be having a bad health day, the things that can happen.
But also, I always suggest, in terms of looking for jobs, look at the companies that have Corporate Social Responsibility programs, that have foundations built into them. Every for-profit company is going to love and brag when they do philanthropic things.
It will be the first thing you see when you Google them and you’re on their website. So it’s going where your interests are. And then seeing the companies that are already actually doing the pay-it-forward mentality of work. And naturally, just sort of in an intrinsic way, they’re going to hire higher-ups that are going to be more proactive and understanding — and having that in their backbone. This is part of the company.
Lauren: They’re more sensitive. I think that’s a really good point. And I think it’s something that it’s very easy to overlook when you’re in the mire, when you’re really in it and you can’t see the forest for the trees … to be able to go, ‘Okay, there actually is a pathway to finding these resources and finding work and making a living and being able to sustain one’s lifestyle.’ So, really, being able to have the community that InvisiYouth has created for young people, I think, especially at that stage where they’re just starting to go into the workforce … having that resource and having people like you who’ve been through it, who can really speak to their experience, must be very freeing for them.
Dominique: Yes. It’s definitely the age demographic of self-discovery, of finding your own interest — and then having to tackle a health condition on top of it, especially with an invisible illness where you already know that from a physical standpoint, people can’t comprehend your needs. And you have to be very proactive. I’m an exception ironically, since I built a charity and I’m a public speaker but I’m very private about my health with people. I had friends from when I was 16 who had no idea I had a chronic illness, until they came to a fundraiser and they saw photographs — because I would hide it. Because I had such a negative response from a lot of my friends, I started to keep a lot of my health to myself, and I was very fortunate to have a very supportive and loving family and I had that ‘friend group’ of my friends that are still there from day one. But I’ve had friends who came back five or six years later and came to a fundraiser and heard me speaking or saw photos, and have said: “I had no idea because I couldn’t see anything.” They would be reflective and say, “There are so many things I wasn’t understanding about what you were actually going through. I never asked how you were.”
So I always encourage young people to be very proactive with their friends, to ask how they’re doing — but to also be receptive to gaining a response.
Don’t just make it the colloquial ‘How are you?’ ‘Fine, I’m good, how are you?’ ‘Fine.’ If you want the shoulder to lean on, you should also provide it, too, and there are different ways of doing that, especially with invisible illness. You constantly have to explain to people what you need, what you like, don’t like, how things are affecting your health.
Lauren: Well, people should be doing that whether they’re ill real or not. And it’s very easy in a culture that’s structured around, Get from point A to point B and do it as fast as possible. To be able to slow down and if someone says, “How are you?” to truthfully answer the question. I don’t think any of us is taught to truthfully answer that question.
Dominique: Oh, absolutely. I will always say the big thing that I learned from the charity, that I constantly say … I feel like I repeat it so often, everyone keeps going, ‘You need to put this on a T- shirt, because you say it way too many times’ …
It’s that having a chronic illness, having an invisible illness or disability and having happiness and success are not mutually exclusive. So I have a chronic illness, and I’m also successful and happy.
There’s such a negative connotation that once you get a diagnosis, once you’re injured or you have an illness, that it’s negative. You can’t find a job, negatively; your friend group’s affected, negatively. Your social life, negatively. I have a whole new type of social network of people. I have my friends who are healthy, and they remind me that on their Friday, it sucks because something happened at their job. And then they’ll hear, “Oh, how am I doing? Oh, well, I had a tachycardia and I visually blacked out. I forgot what my boss said while she was talking with me.” And they’re like, “Oh, my problems don’t compare!” But to me, they’re two different types of problems. Those are your healthy, able-bodied problems. These are my medical problems. So they’re equal. They’re just problems.
Lauren: That’s a really important thing to point out as well because, having these disabilities or conditions doesn’t make us holier-than-thou. It doesn’t lessen our able-bodied friends’ day-to-day struggles. It’s just that our day-to-day struggles are equal, but different.
Dominique: Yeah. And a lot of times, with my healthier, able-bodied friends … or even sometimes my sister will say … when I think a lot of things are happening because of my health … “Oh, maybe this opportunity is not opening up because I’m a boss with a chronic illness and I’m a founder with the chronic illness.” Sometimes my sister will have to give me that reality check and say, “A healthy founder of a nonprofit would have the same problem you are having right now.” It reminds me, a lot of times we do think, especially with an invisible illness, it’s this subconscious judgment tone of, ‘Oh, do they think I’m lesser, or not capable of something?’ Sometimes it’s that they would question me if I had no health issues as well. So sometimes it’s not your health issues being brought forward. It’s us bringing them forward. And you have to know your own barriers of how you’re able to work.
Lauren: And speaking of knowing your barriers, do you have any anecdotes you can share with us about experiences you’ve had where you have been forced to justify what’s going on — to people who didn’t understand it?
Dominique: Absolutely. Even with InvisiYouth, when I wouldn’t be giving public speaking engagements for medical communities or at universities, I would bring in my whole backlog of photos. And I have some very visible, poor [looking] hospital photos where I say it’s like the ASPCA dog … it’s the one photo from my back surgery. I look very, very acutely pathetic in this photo, and every time you will hear the ‘awws’ from the crowd right away. Everybody knows this photo of me; I don’t even have to turn around. I go, ‘Yep, it’s that photo that’s popped up behind me. I already know by the reaction.’ But a lot of people will start to question my capability of running as a typical founder … like, “Well, you have health struggles and you have good and bad days.” But I also then justify …
Well, I’ve built the nonprofit to be adaptive to me; every program is adaptive to our brand leaders who come in; it’s flexible to them. We build everything by that book.
That’s why sometimes it takes longer because I have to start justifying, structurally, the charity’s flexible breathing room … why it doesn’t look like other nonprofits or sounds like other nonprofits. And that’s because I have a chronic illness and I have to run it. And people will then question, “Oh, does this make sense? Is it secure enough? If something happens, who is second in command to you?”
Lauren: Do you think they would ask that question if you were male?
Dominique: I do. I’ve run into that, especially having launched the charity at 22. I’ve walked into meetings for sponsorships with corporations, and as a public speaker … and obviously being a female and looking younger … you could immediately hear the slight chuckling; the sighs of, ‘Is she capable?’ Which is natural for female entrepreneurs, especially when I’m 20 to 30 years younger than other nonprofit founders or directors.
And I always say, give me 30 seconds and then you’ll pay attention.
Lauren: The other side of that is that you’re so driven, and the drive — whether you’re able-bodied or invisibly ill, the drive is no different, is it?
Dominique: Yeah. My biggest piece of advice is if people start to challenge my capability because I have a chronic illness — so I have naturally bad days, medically, and there might be health setbacks — I’ll always say, “Well, you’re not going to find my hard-working or flexible or adaptive nature in a healthy and able-bodied employee or founder … because I’ve had to wake up and be somewhere at 12 o’clock, and all of a sudden have complete neuropathy in my leg and I still have to walk around New York and I have no physical sensation … and I have to adapt how I’m walking.”
So I’m constantly learning how to adapt and be successful because my health has trained me to deal with the biggest types of roadblocks medically.
Lauren: It’s not a disability; it’s a superpower.
Dominique: Exactly. I’ve said, “I’m the one who can adapt and change to any sort of issue you would throw at [me] because I’ve had to do it just in my day-to-day. So for me, my chronic illness is a benefit to you.” And when people start to see that you look at it through a positive lens and not the sort of negative melancholy scope that general mainstream media puts it in … that’s when that makes you successful, because you’re using it as a strong suit.
“Yeah, I have bad days. So do you. But this has made me work three times harder. I have seven ways of adapting to a problem, where somebody else would have three.”
Lauren: And it makes you the ideal employee, too. Because when you think about it, we’re all taught in the workplace not to come to a boss with a problem unless we’ve got a solution. You’re always solution-based, aren’t you? There has to be that positivity. But it also sounds like — partially because you had that trial-by-fire as a very young person being ill — that you’ve just naturally got a very positive point of view. And you’ve been able to get to that place at a young age, accelerating this experience of becoming an adult … that you’ve been able to really look at the experience and find the positivity very clearly.
Dominique: Yeah. One of the people that we’ve worked with quite a bit — I mention her all the time — is a British motivational speaker, and she’s a burn survivor, Catrin Pugh. She came on our video podcast and we talked about: if you’re feeling uninspired, or there [are] a lot of negative things going on and your health is really bad – you’re just having a horrible day – people always say, “Look [on] the bright side.” Or, “Well, you have a chronic illness, so you’re naturally closer to God in how you think because you had to struggle.”
I spoke with Catrin about this; the mentality of a controlled wallowing period where, if I’m feeling bad for myself, I give myself my allotted less-than-one hour. I will put on my very sad Alanis Morissette or Adele music, and I will allow myself to feel very sorry for myself and think, ‘This is the worst thing, my body hates me.’ And I’ll just go through it. And then when it’s over, it’s done.
I’ve allowed myself to express it, so I say, ‘Okay, well, now you have to move on.’ Logically, you still have to continue the rest of your day.
Lauren: This is such a healthy approach, mentally speaking, because I think so many of us struggle to even get to the point where we’re expressing ourselves. To say, ‘I’m going to give myself permission not just to express myself, but to really go there. And to just concentrate on going there. And you just get it out. It’s like having that really good cry. So it sounds like you’ve got a very healthy approach to allowing those ups and downs to co-exist.
Dominique: Yeah. And when people say you constantly are trying to work through the bad days, that’ll start to continue to build up — especially with an invisible illness, where no one’s giving you that immediate support that you need because they can’t see it. And sometimes you just don’t have the energy to start asking for it. Especially if you live alone or if you have roommates, you just don’t have the physical energy to ask people to come to you and support you, because you feel like that’s somewhat of a burden to them. That’s why it was very important for me to just say, well, no, if I’m really having a bad medical day, I have to kind of give it to myself and just say, ‘Okay, allow it.’ Because by saying those feelings aren’t warranted, I’m only saying that positive feelings are warranted. And that’s just not gonna make the good days good.
Because, for me, I have to know what a bad day feels like in order to know what a good day feels like.
Lauren: I think that’s part of the learning experience when you have any kind of illness … you really learn you don’t have the flowers without the rain, you don’t have the sunshine without the clouds … all of that stuff really starts to make sense in a whole new way. So it’s cool to hear that someone like you, who’s an advocate and an example to so many young people, has really taken that on and you’re sharing that with people. So kudos to you for that.
Dominique: Thank you!
Lauren: So, how important is it that we keep talking about invisible illness? And, I want to look at this in the perspective, or the rubric, of our [US] healthcare system. You’ve had insurance issues, and you’ve tried to navigate those pathways. What is the power of advocacy in a world like this, in a health care system like this? Where do you see [your work] creating change – and positive change [at that]?
Dominique: Especially on the invisible illness spectrum, just from a mainstream media perspective, there aren’t characters on TV shows or films with a visible illness or disability. That’s very uncommon; accurate casting of somebody who’s in a wheelchair — being played by an actor in a wheelchair. You don’t see that very often. There’s not even a subconscious narrative of seeing it as somebody who needs to function daily. People have to function for decades and decades and decades of life with a lot of these chronic illnesses. So you have to show the ways that people can thrive in life and build a life for themselves. Seeing more public figures — somebody like Selena Gomez talking about having lupus and having an invisible illness, or Debbie Gibson having Lyme disease, or Avril Lavigne building her foundation for Lyme disease — and showing why somebody has left the spotlight and has come back in, more people can then relate, and perhaps point to other siblings [or connections] they might have.
I always say … there’s no six degrees, everyone has a one-degree connection to chronic illness.
It’s either a direct connection to yourself, your siblings, or parents or relatives — or it’s someone you work with, or in one of their children, or their siblings, or their spouse. There always is a direct connection. It’s just because there’s not very public discussion on chronic illness, it feels like it should be negative and sad. With InvisiYouth, that’s something that I’ll proactively say to a lot of young people:
“Tell your doctors that you want to thrive and function. Ask, what is it you’re asking me to do? How can we adapt that to what I need to do in my life?” I always said to my doctors something that now has become a catch phrase in the charity: How can we compromise this medical situation without compromising my health? And let’s meet in the middle.
Because we can all find a way to meet in the middle without compromising my health. But we’re still compromising what medically we’re allowed to do based on health care coverage or insurance coverage. With InvisiYouth, we work in countries where there’s national health care services, or a combination of the two. I am always trying to get young adults to speak to one another, to see all forms of treatment plans, to allow traditional medicine and integrative medicine, to start becoming more verbally proactive. That was a big thing for me, having so many young people coming to the charity saying, “I finally asked my doctor about acupuncture and different types of integrative medicine programs.” And I always say, the big three-letter question is:
Always ask “why” when you’re with a doctor.
A lot of times, it could be an insurance issue … it could be your medical structure … but you have to be able ask why — and they have to be able to tell you an answer. Or say, “I don’t know right now. Let me get back to you, or have a PA or a nurse get back to you.” But ask the question. If you’re being told, “Well, we shouldn’t go down this road,” or, “We shouldn’t do this treatment plan”; “No, you wouldn’t qualify for this,” ask WHY, because sometimes you then can become proactive and call your insurance company and figure out the actual [reason] certain things might not be getting covered. But a lot of people … they’re told no, and then they leave it.
I tell doctors in my speaking events, when I speak to new clinicians: “Do you ask your teenage patients why they’re saying no to a treatment plan?”
One specific example I had was a 17-year-old that was volunteering with my charity, who had cancer. And her doctors had wanted her to go back into chemotherapy. She was graduating, and I knew from the social side that she didn’t want to start going through that whole process of physical changes — hair loss and the physical repercussions of chemotherapy. And so she wanted to delay it a few weeks. And she didn’t tell them that, and they were in this sort of locked-horn conversation. And I remember when I mentioned it in a speaking event, the doctor said, “Well, that was just her being antagonistic towards the doctor.” And I said, “Well, the doctor should have asked her why, and she would have told you. And then you would have said. ‘You could do XYZ leading up to it.’ You could delay things differently for her.” As medical professionals, they definitely have to be proactive as well. I always say I’m very fortunate to have a mother who’s a nurse who is always very protective and very proactive with her patients, and is always making sure that they ask the right questions, and asking them, “Do you have questions for me?”
You should ask doctors different questions and be surrounded by empowered medical professionals.
I’ve gone to 47 doctors at this point … my lucky, fun, special amount of doctors I’ve been sent to!
Lauren: And actually, that’s probably not too bad!
Dominique: Right?! It’s probably double my age at this point! Definitely a lot of them never asked how I was. And to think of having 47 doctors and I can probably name five to eight of them who stood out, who actually asked, “Why don’t you want to do [certain things]? How are you feeling with this? What do you think of this treatment plan?”
It’s having the medical community actually start to communicate with their patients — because there is this weird, invisible wall that nobody wants to speak to one another. Young adults feel discomfort with some medical professionals, and the doctors feel discomfort with young adults because they communicate differently. And you have to find a way of meeting in the middle, and asking each other: Why and how is the best way of doing that? To then provide the best care that you learned in medical school, and the best way that they can live their life with an illness.
Lauren: It’s that empowerment that you mentioned. We don’t often hear the phrase ‘empowered medical professionals’, because we presume that because someone’s gone to medical school, that they’re feeling [naturally] empowered. But they may be feeling just as helpless as you, and not know how to communicate with you. And that just goes to show the importance of communication. I think that’s such a wonderful tip, really. Which leads me into … I always end these interviews with a couple of Top Three Lists. And I wanted to ask you what your top three tips are, for someone who thinks they may be about to enter the invisible illness world, or is in the midst of it and feeling like they can’t navigate it. What are your top three tips for people in that position, particularly for young people?
Dominique: For young adults, the number one thing I’ll always say is to be kind to yourself. It’s the hardest thing for young adults — across the spectrum of healthy and able-bodied, all the way into chronic illness and disability. We’re often very hard on ourselves as young adults, and feel that weaknesses can’t be tuned into looking at them as comebacks from setbacks.
And you have to give yourself those moments of: It’s okay to not be okay. Be kind to yourself.
I always say if you’re feeling that self-loathing mentality and feeling very sad for what’s going on medically, what would you say if this were a friend of yours … what would you tell them to do? You would tell your friend: Take a minute, breathe, you’re going to get through this, we can get you to tomorrow; focus on today. That’s what you should then be saying to yourself. If you would tell your friend: Life sucks. Just lay down. And feel sorry for yourself … that’s not what you should say to yourself. So just be kind to who you are, and know that you’re allowed to feel all the spectrum of emotion. When it comes to the diagnosis process, it’s a very confusing one for anybody.
Be your own advocate. Don’t expect anyone to be an advocate for you.
You can only build a team of advocates and build your network of support by you being an advocate. Whether that’s a very verbal, proactive advocate like I am … everyone thinks that if you say ‘be an advocate’, it’s, ‘I’m standing on a soapbox, I’m proactively asking questions.’ There are all different forms of advocacy. You can be one of the quietest patients — and just bring a list of questions you’ve researched. You’ve looked up different alternative treatments … you’ve come into InvisiYouth and have met people from different countries with different illnesses. You have different types of ideas; write them down and you can hand that to a doctor. You can call and ask, “Can I email ideas to you so I can come into the appointment and we’re both on the same page?” That’s the less verbal proactive advocacy, but you have to be the one advocating for your own health more so than anyone else. You can’t expect your parents or your guardians to do that more so than you; everyone has to be supporting you to advocate for yourself. Because it is your health at the end of the day. It’s your name on the chart.
Lauren: Absolutely. I think those are such good pieces of advice, and you’ve shared so much. In the realm of advice, I feel like people are going to get so much out of this. Now, also – I’m presuming because of your various conditions, you’ve had to make some lifestyle changes — to accommodate treatments, or maybe you have food sensitivities … or exercises that you’ve had to work around with your physical therapists. I’m wondering if you ever cheat? And if so, what are your favorite Top Three indulgences or comfort activities for when you have a flare-up? What are things that you turn to that just make you happy?
Dominique: Oh yeah. When it came to physio, and especially with RSD where there is such a chronic pain element to it, you have to work through pain. Your mind sort of becomes very accustomed to feeling uncomfortable, and it’s that physical pushing barrier of my competitive athlete nature … any time I’m doing physical therapy, or going to a gym, usually all of my trainers at the gym are well aware of my health. None of the other people who are there with me know I wear a heart monitor to watch myself to be safe. The trainers are aware of my health as well. So obviously, if I’m sort of stumbling and I look like I’m kind of passing out, they know what’s happening. But even 10 years into it, I still will push my body because it’s just that competitive athlete nature — where sometimes even the trainers will go, “I think you should just sit down,” and I’m like, “No, no, there’s 15 minutes left and everyone else is doing it. I should do it.” And they’re like, “Dominique, take a break. Drink some water. I don’t want to see you jumping on a water rower. Sit down.”
Lauren: It’s no secret that you’re a go-getter, that’s for sure!
Dominique: (laughs) And even just on the relaxing side of it, having the English writing background, I’ve always loved reading. That was probably one of the most frustrating things, having issues of sensitivity to reading on screens, and I liked tangibly holding books. So getting a Kindle and having it read to me, I was always, ‘No, no, I need the old-school, take a book, feel the paper kind of a girl.’ So some days, it was: If I have to put sunglasses on to read this book, I am going to do it for myself. If you’re wearing those Google glasses to look at a screen or you’re looking at a book with sunglasses … for me, it’s massively cathartic. And ironically, going into acupuncture has really broadened my approach. I say, it’s sort of easy; it’s basic. Its taught me old-school basic ways of meditation. It’s not hardcore, but it’s really mindfulness — being calm, and for me, it’s less than five minutes. Even if I’m waking up in the morning or going to bed, it’s just repetitive focusing on my breathing. I’m very chatty. I cannot get my brain to stop talking to me. So the whole idea of calming my mind and turning it off, … it’ll last five seconds and then my brain will go, ‘Oh, I think you forgot to do something. Wait, hold on, write that down. What did you say again?’ And my brain starts going again. I knew I wasn’t capable of a long-winded meditation or calming sensation, but … five minutes I can do. And just knowing that it is a small of window of “me time” — whether that’s listening to music for five minutes; I have a playlist on my computer. My guilty pleasure is Hallmark Christmas movies! I have a mug that says I watch those 100% when they come on in October! I’m like, ‘Skip living, it is Christmas!’
Lauren: You can be a couch potato for two months straight!
Dominique: In college, if I was writing papers, and it took me longer because of my health and if I felt better at 11 o’clock at night, I was starting to write papers at 11 o’clock, because that’s when my body felt better. So I might do it then, or if it was in the middle of the day and if I had so much physical pain going on, it was: ‘Okay. I’ll just put on a Christmas Hallmark movie and I can turn off everything else and just watch. I know it’s going to be a happy ending — and I’m happy!’
Lauren: You can just let your brain go. I mean, it is sort of meditative, isn’t it? Because you let the narrative take you somewhere else.
Dominique: Exactly! So for me, it is those weird, sort-of calming guilty pleasures elements. I have music playlists for different things. Listening to other podcasts that are more calming. I have mind/medical breaks throughout the day. If I’m medically feeling that I can’t continue doing emails, or I have to get up and move or something’s going on, I have my treats to myself — I like soccer, so I watch Premier League soccer, or Expedition Unknown, or National Geographic things, or watching my Christmas Hallmark movies because I love ‘em. It’s just sort of my little treats to myself if I’ve pushed my health to a different limit. So then I can at least give myself a little five- or 10-minute break and then go back into work. But it gives me time to stretch out my hand, put heat on, do something that will help with my pain from a neurological standpoint. Do I have to dim my screens? If I have to start medically tailoring, I kind of treat myself while I’m doing it, instead of being frustrated because I have to take 20 minutes because I can’t look at this computer in my hand … While I have to take the medical breaks, especially throughout the day, I’ll do things that are more calming on my end — finding different TV shows … obviously working for teens and young adults, they always keep me very up-to-date on what’s fun for them. So there’s a whole network of TV shows called Skam, that is a Norwegian show that’s now in about 10 countries. They have an American version. It started in Norway; they have a French version, Italian version, [Spanish] and Belgian version, it’s everywhere. But working with young adults, they’ll always tell you about fun new shows. So that was a fun find within our first month with InvisiYouth. I had somebody from the UK say, “Oh, this helps me when I’m in the hospital because they drop clips every day of the week. So it’s my little treat to myself during treatment.” They would watch different clips because they came out every day. Finding things like that, and …
… being able to treat myself in the times that my body was mistreating me — that was my best pat on the back when I would have bad health moments.
Lauren: And it gives you a positive structure as well.
Dominique: Yeah, and that took a long time. Often, I would become very agitated if I had emails to do, and I’m sitting there and I couldn’t move my limbs; it would just be very frustrating, and I would start getting very upset. ‘If I was healthy and I had two good hands, I could do X, Y, and Z — but you have to sit here and stare at a computer because you can’t move your hand.’ I was tired of being frustrated multiple times during the week. So that was my shift: ‘Okay, well, while I have to do some PT on my hand for 20 minutes to loosen my muscles, I can watch this on on my phone, I can do this on the computer.’ And then it was cool. It was more entertaining for me, while I subconsciously was doing what my body needed it to do.
Lauren: You think about all these exercise machines at the gym that have screens you can plug your phone into, so people can listen to the music they want to listen to, or watch an episode of Friends or something while they’re on the bike. It does take your mind away from the grueling aspect of that work. Able-bodied people are doing that all day, so why shouldn’t you? I think that’s just a really smart strategy that you’ve put together for yourself.
Dominique: Yeah, just owning what you medically adapt to. I go to the gym and my whole left side is braced up; I look like I’m going to war on the left side and I’m healthy on the right. And so everybody knows because I’m coming in with knee braces, hand braces, elbow braces. And because [of] how loud music can be in a gym, I wear earplugs. I’m practically albino, I’m so pale, and [the braces are] very light [in] tone to [match my skin tone]. So most people don’t even know I’m wearing them. I actually had one of our brand leaders mention that they do it at one of their physical therapy places because it was easier for them. So now I use it.
It was just finding that if I wanted to do something a lot of my healthy, able-bodied friends were doing, I had to find the adaptations that then allowed me to do it.
So I joke, Tylenol and KT tape in my bag at all times. And portable HotHands;I have those on me all year round, even when it’s not cold. Because with a lot of touch screens, when my hand’s too cold, I can’t open it. I can only touch with my right hand. That’s fun! So it’s finding things that you can keep as your medical toolkit with you all the time.
Lauren: And having a community where you can get suggestions about what’s working for other people, so that you can find new things that might work for you if you’ve exhausted all of the options. Well, Dominique, this has been wonderful. I’m so glad we’ve had you on the show. Can you tell our guests where they can find you and InvisiYouth?
Dominique: You can find us at InvisiYouthCharity.com, and we’re on social media at Twitter, Instagram, and Facebook, @InvisiYouth. And then our video podcast series, InvisiYouth Chat Sessions, is on our YouTube channel. And then we’re on pretty much all podcast networks from iTunes, Spotify, Google Play, Stitcher. If you look up InvisiYouth Chat Sessions, I’m sure you will find it everywhere you are.
Lauren: Dominique, thank you so much. I’m really looking forward to seeing what everyone gets out of this discussion with you. And thank you for the incredible advocacy work you’re doing for young people. And it’s not just young people, actually. Because I’m in my 30s, and I’m getting plenty out of this!
Dominique: And thank you so much for building a whole podcast dedicated to the invisible illness community, and making them very visible and prominent, and letting people share their journeys. The best way of learning is learning from one another, so I can thank you as well for building a podcast that allows people to hear the invisible illness stories that need to be shared.
Lauren: And how great is it that we found each other, too, and now everyone can find us?! Thanks again, and I look forward to having you back!
Dominique: Yes. Thank you so much!