The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason

Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, they even lead to new beginnings. 

That story is exemplified in Ryann Mason. Our volunteer media team had the pleasure of interviewing a fellow EDS patient, nurse, and advocate for this month’s newsletter. Mason is a disability advocate and has been living with EDS since their* diagnosis at 16 years old. Originally from a small rural town in Virginia, they were crowned Miss Virginia Wheelchair in 2020 and 2021, and since then, Mason has been rolling forward with their continued nursing and sex education programs for people with disabilities. Read on to hear her patient story, how she came to use mobility aids, and the ways she is helping others destigmatize delicate issues, such as how she teaches other disabled people to experience sexual fulfillment. 

Jackie Saa:

Welcome, Ryann! We’re so pleased you could join us and the community of fellow patients and caregivers with EDS Awareness. We want to get to know you, so let’s start right away with our questions. 

Ryann, when were you diagnosed with EDS, and what was your journey like?

Ryann Mason:

I was diagnosed when I was 16 years old, and I’m about to turn 31, so about half my life ago.My story is probably just as crazy as every other EDS patient’s experience. I grew up a super flexible, bendy and clumsy kid. Lots of rolled ankles, falls and bumping my head, but nobody ever thought anything about it because I was a kid. I grew up in a rural area. My sister has something called pectus excavatum where her ribs dint inward and that is a standard diagnostic tool for Marfan syndrome, a close cousin of EDS, another collagen disorder. When I was 16 and my sister was 14, she had an appointment with a geneticist, and I went with her. The geneticist started looking her over but also  took one look at me, and said, “This is your sister, maybe we should evaluate you as well. Would you change into a gown?”  He continued, “I don’t think either of you have Marfan syndrome. But have you ever heard of Ehlers-Danlos syndrome?” I said, “No, I can’t even pronounce that, let alone spell it. What are you saying to me?” By that time, I had heard the term ‘hypermobility’ thrown around. So I got that diagnosis then, but at that moment in my life, it didn’t make a difference. I said, “Peace out, man. I’ve got things to do.” It wasn’t until later that the diagnosis really started to affect my life, and I started to take in what it meant to have a diagnosis like Ehlers-Danlos syndrome.

Saa:

Did you always want to become a nurse?

Mason:

Not at all. I wanted to dance on Broadway! That was my dream. I was an active dancer at that time dancing 13 hours a week with goals of auditioning for Juilliard. I was a great dancer because of EDS. But once that diagnosis happened, I thought, “Where do I go from here?” My doctor told me that dance was definitely not going to be a long-term activity for me. The only thing that they kept telling me was, “You’ll be in a wheelchair by the time you’re 20.”  I kept hearing that echo over and over in my head. I even developed an elevator speech so people could learn about my diagnosis. It started off as, “I have this genetic joint disorder, I’ll be in a wheelchair by the time I’m 20, but I’m here. I’m fine.” I didn’t think anything of it. 

Around the same time that I was diagnosed, I was trying to think of other things that I could do with my future, but I was still refusing to give up dance. However, maybe there was something else I could do at the same time?

So when I was sitting in the emergency room with my mother I was watching all the ER nurses scurry about, and I was interested. When I was in 6th grade, we toured a certified nursing assistant class that happened to partner with my school. We went on our tour on a really hot day. I’d not eaten breakfast. The room was very warm, and I’ve always had issues with my heart rate getting too high when it’s warm. So like many of us, I can get pre-syncope or pass out sometimes when that happens. That day, I’m in a class watching them do a demonstration of CPR, and I’m about to pass out. My wheels started turning. At the time, I was convinced that I was too squeamish to ever be a nurse and had no exposure to medicine. As I sat in the ER with my mother, I kept thinking, “There’s no way I could do this.” And she looked at me and said, “If you’re going to be in the ER so much, you might as well get paid.”

Saa:

I love it!

Mason:

Completely joking! But right then I knew: I can do that. Let’s go! It was only a few weeks later that I signed up for a night class to become an EMT and ride in the back ambulances. I took that one class, and I was absolutely hooked. I realized maybe this will be something I can do in the future, and so I went to college. I decided to study both dance and nursing. And that’s where I am today.

Saa:

Congratulations!

Mason:

Thank you.

Saa:

Can you tell me how being a nurse enabled you to better deal with your diagnosis?

Mason:

Oh, goodness, yes and no. It has made me both a better and a worse patient when it comes to dealing with my diagnosis. Especially in times in my life where I didn’t have access to any specialists or doctors who had even heard of EDS. I never really had anybody telling me what I should be doing, how I should be caring for myself, or what the plan was. Nobody knew back then where I lived. I was guiding them all along. And because I was a nurse at the same time, I could work together with my treatment team, and we would go through options as a nurse, not just a patient. We would sit down together, do the research and come up with treatment plans. I often felt I was guiding my treatment team, which is helpful. But at the same time, being a nurse and working in the hospital system for so many years, it gets very frustrating because I see how beneficial a medical system can be. I had the chance to see how helpful some doctors have been for some of my patients and how much they’ll throw themselves in and dive-in trying to find a diagnosis.

But I don’t always get the same experience as a patient. With EDS, I have been being gaslighted over and over. I grew tired of being told ‘it’s all in your head.’ Being called a drug seeker. All of the things that so many people with chronic illnesses, especially EDS, have to deal with. Being a nurse has made it so much harder because I’ve witnessed patients being treated better. And I wondered… why not me? Where’s my doctor who’s going to help me find my way out of this?  For the longest time, I had to do it myself, and it was really, really hard. But that nursing knowledge has also helped me to better advocate for myself which I also teach my patients everyday. And so finally, I turned around and told myself, “You know what? Maybe you should stop telling other people what to do and listen to yourself for once.”

Saa:

Your patients are lucky to have you. I have EDS as well, so I often find myself in and out of urgent care and hospitals, unfortunately. I have experienced some nurses who just want to get you out of there. And this can feel like they don’t want to help while they’re just overworked. We feel dismissed when we hear, “Oh, you’re in pain. Let’s just give you an IV with morphine and send you home.” You feel like a hamster on the wheel spinning and going nowhere. It sounds like you’re really helpful in that area for others. We all thank you.

Can you tell me some of the challenges that you face in your work environment? I know that you were in the ER, and now you’re in schools, right? Can you tell me about those experiences?

Mason:

I’ve worked in the hospital for about four years, three of those being a case manager, not hands on. One of those was as a postpartum nurse, completely hands on. I was a bed nurse, and a charge nurse for a year last year. Then this August, I started as a school nurse. I’m experienced in those three different realms. All in a wheelchair. Then being in patient care, a bedside nurse and finally being a school nurse has been three completely different experiences with my disability. When I was a case manager and working in the office I brought my wheelchair into a hospital setting for the first time. I had never done that before except as a patient. It was interesting because I had been working in the hospital on forearm crutches. They had seen that. But everyone needed to adjust to my new mobility aid. Also, I am an ambulatory wheelchair user who may or may not stand up and  take a few steps every once in a while if needed, which is confusing to people. I did not require the wheelchair as I could still move my legs, but needed the support it provided.

I wondered how often I was going to be explaining myself, with every nurse, every medical student, every doctor, every surgeon looking at me. I had to navigate this path. I soon learned that was going to be a huge part of my life, and I was going to have to get pretty comfortable explaining my body and educating others about myself and my diagnosis. Keep in mind, now I know that I do not have to do this. You never have to disclose your disability, and you never have to explain your medical situation if you do not want to. Now, I am a teacher. That is what I love to do. My entire point of returning to the hospital in a wheelchair, knowing that it was going to be rough, was to bring about better representation and show that this is something that we were able to do.

When I moved into bedside nursing from a wheelchair, that was even more so. People flat out told me, “There is no way you can do that. Have you ever been a nurse from a chair? Do you know how? Can you do it?” Well, I responded with a firm ‘no’ but no one’s ever done it before. Once again, a repetitive theme in my life is when people challenge me by telling me that I can’t do something. That’s when I get motivated! So, I showed up in the postpartum unit in my wheelchair.  I told myself, “I’ve been in healthcare for 15 years now. I know what types of the healthcare realm are best for my body. I ended up in the postpartum wing helping care for mothers and their babies. 

The nurse that was teaching me was experienced but I could tell she was skeptical. She never said anything, though. It wasn’t until I left that job, when she told me that first day I came, she told the charge nurse, “Please, do not put me with her. I’m going to have to do all of her work. She’s in a wheelchair.” I don’t blame her. If I had been in her shoes ten years ago and I saw her in a wheelchair coming up to me, I’d have been concerned I would end up with all her work too. Of course, by the end of that shift, she told me, “You’re just like every other nurse.”

In a way, my wheelchair enabled me to be the first person available to my patients. It showed my patients that I knew what it’s like to be in this bed. I knew what it’s like to be surrounded by doctors who are talking to you in a language that doesn’t even sound like English at four in the morning while you cannot focus. My wheelchair ended up being this incredibly bonding tool for me as a nurse, and it has improved my nursing care ten times over. 

As a school nurse, I work in an elementary school. It’s been the most eye-opening thing in the world because as a nurse working in the hospital, I would have to constantly explain my disability. Constantly roving myself. Reassuring everyone around me that I could do my job. But in the elementary school, no one cared about my wheelchair. My students love it and think it’s the best thing ever. It’s decorated in rainbows even! Occasionally, the older kids ask, “Why do you need a wheelchair if you can walk?” And we have an educational moment of ambulatory wheelchair users, and they say after I explain that it makes sense. Then they go back to their day; that’s it, the end. It’s been a cool transition for me to go from the hospitals to the school systems and just seeing the difference to how disability is seen in those different realms.

Saa:

My daughter just turned 13, but my oldest is 21, and so I was often the room mom who volunteered. In elementary school, they are so sweet. The kids are kind, thoughtful and make you feel good about yourself every single day. 

Mason:

I have some Pre-K little four-year-old students now and the nursing intervention with those kids is to provide comfort. At the beginning of school, I had new kids that had never been away from home before and were scared to death. Next thing you know, they are in my office and see my wheelchair, and we’re rocking. They love it. 

Saa:

I was browsing your popular social media channels and your partner’s profile to prepare for this interview, and I noticed that both of you are athletes. I believe that you both have some type of chronic illness. Can you tell me how the two of you met?

Mason:

Absolutely. My partner, her name is also Ryen. We actually met via social media. She is originally from Southern California, and I’m originally from southwestern Virginia. She found me on Facebook. Neither of us really remember how and why, because a lot of times in the disability community, you just end up friends with people from all over the world. But we think it was around the time that I was crowned Miss Wheelchair Virginia, which was a nationwide title. I was a disability advocate in Virginia, and I got to wear a crown, and it was great  – for two years. Because of that, my story was told nationwide, and Ryen heard about me. She reached out on Facebook because she noticed I was another Ryann and also in a wheelchair. The thing about my girlfriend is that she was born with a form of cerebral palsy called plastic diplegia that only affects her legs. She also uses multiple mobility aids. When she found me on Facebook, we both knew what each other’s life was like and immediately connected.

But for her job, she’s training for the Paralympics on the hand cycle. I have learned a lot about adaptive athletics and para sports because of her. It’s been cool being in a relationship with another person who absolutely gets the struggles that we go through every single day. We moved from Virginia to San Diego, California, together this summer, and going through that entire move as two disabled women driving across the country, I could not have done it without her. Others don’t realize how often people in wheelchairs are stuck in random places that are absolutely not accessible. I had previously been doing that by myself and I was constantly having to reiterate my access needs. It would have been a much more stressful experience than what it was like going through it with somebody who understood.  

Saa:

That’s amazing! From what I’ve seen, your relationship is so endearing. We all only hope to find someone who understands us that well. I’m so happy for you guys. I wanted to ask you, which sport do you participate in? You’re an athlete, right?

Mason:

Yes, I am. Being in a long-term relationship with a professional athlete, the first question everyone asks me when they get to meet me is, “What’s your sport?” When I started to lose my mobility, I had never participated much in traditional athletics. Growing up, I was a ballet dancer and I did martial arts but I didn’t play traditional team sports. After I began to use mobility aids, I started getting into fitness because I realized I really liked weightlifting. I started there, and so I continue with weightlifting and branched on into Spartan races too. I do obstacle course racing, which is really, really fun. When I was in Virginia, I was on a wheelchair basketball team. But since I recently moved, I’m still searching and have tried so many adaptive sports. I’ve tried sledding, hockey, sit skiing, all of it. But near and dear to my heart as far as my personal sport or hobby activity is dancing. It will always be the answer for sure.

Saa:

Do you get to do some of that still?

Mason:

I do. I actually just got back into it. I started taking classes once we moved here including burlesque dancing classes. The first dance studio I called was located on the second story of a building with no elevator. But the studio was helpful with accessibility and has made virtual classes available, and even had recommendations for other disabled burlesque dancers who had videos online they shared with me. Over the past months, I’ve started getting back into that and relearning that world.

Saa:

I’m happy for you. Thank you for sharing. I wanted to ask you about your sex education programs and how EDS has affected what you teach people?

Mason:

Absolutely. I studied public health education and specifically human sexuality. Now I teach a “PG version” of sex education because it’s something that doesn’t exist in the disability or chronic illness community. People do not know or understand how sex and pleasure are different when you have a medical condition or diagnosis that changes what traditional sex and intimacy looks like. For me personally, I had to relearn what pleasure and intimacy was because as my disability progressed, I had a lot of issues from my years of dance where my hips are damaged from the frequent dislocations with nerve damage. And so, everything is just janky when it comes to sensation sexually. 

So I originally learned this about myself back then, while I was dating a man with a spinal cord injury. We talked about it, and he reluctantly shared how his pleasure and sensation is altered. Basically, he didn’t know what to do. Sex and intimacy with a disability doesn’t look the same to somebody who is able-bodied. Then I started interviewing people, and asking my disabled friends if they had ever gotten any kind of sexual education, even just from a physician, from a physical therapist, or anybody during their diagnosis journey?

It did not matter if it was a chronic illness patient, an EDS patient, a person with a spinal cord injury or something from a major traumatic injury to a stroke, the answer was a resounding NO! I met a young boy who was a paraplegic because of cancer. I worked closely with his mother inquiring if his doctors gave him some sort of a guide to go through to help him because he’s going to hit puberty in a few years. What then? What does that look like? The mother had received nothing.  So, I turned to creating a video series and educational pieces specifically for people with disabilities and chronic illnesses in which sexuality and intimacy might look a little different. I recommend toys, different forms of pleasure, touch approaches that are PG, but providing an education that doesn’t seem to exist. That’s where it started. Now I’m getting to work with brands and do more education for our community, which is really cool.

Saa:

Yeah, it’s very cool. I was so excited because last month we were able to do a sexual education topic in the newsletter. We expected we were going to have a lot of back-lash but surprisingly to us, it was received really well and had an amazing response. It’s like you said, nobody really knows how to guide us. We don’t have occupational therapists, physical therapists, doctors, not even the gynecologist helping us.

Mason:

Yeah.

Saa:

What you do is so important, but why do you feel it’s important to share your journey on your social media platforms?

Mason:

When I was diagnosed with EDS at 16, I’d heard the words hypermobility, hypermobility syndrome, but never EDS. I was going through this whole journey for years before I started my social media platform. Back then, there wasn’t really social media. This was before Facebook was big. It wasn’t like I could just log on and connect with other people with EDS. So, my journey was very lonely. I didn’t meet another person with Ehlers-Danlos syndrome until a decade after I was diagnosed. Living in a rural part of the country, it was even harder for me. I started my social media specifically because I was starting to use a cane and other mobility aids. I originally made my social media for my family members who lived really far away to understand what was happening. It only took two weeks for me to realize that there was this entire community out there and suddenly, my inbox was flooded full of chronic illness and EDS patients and wheelchair users who have gone through the exact same thing. 

Growing up, my coping mechanism for my own mental health and disability struggle has always been to write or to talk about it. So, I started at first writing journal entries of what it felt like the first time I went to a grocery store using a wheelchair, or what the encounter was like the first time somebody told me, “You do not need the handicapped placard” when they saw me stand up after parking my car in a handicap space. To see somebody on social media sharing so candidly what they’re going through, but also educating at the same time, I think it’s just so important. I tell people all the time, the only reason that I am up here and doing this is because I am becoming the person that I needed when I was diagnosed. I needed somebody who was open and honest and recognized this is not fun. To share things and offer hope that it’s going to get better. I never had that. I experienced many dark years, thinking I was crazy, or things were all in my head..Now I can reach out to the community and understand it’s the nature of chronic illness or EDS and what many of us experience. Doing this and sharing my story openly has not only changed my life because of what I’m doing for a living now, but it’s completely changed my own health and my own journey and helped me to accept my disability. Because if I had not been able to have this platform to vent and to discuss and to help educate my way through the dark times, it would have been a lot worse for me. I am so thankful to be in this position.

Saa:

Thank you for your gift to all of us. One last question. What’s next for you?

Mason:

After moving to California, that dream in the back of my head of being on the stage still lives on. I am in a good position finally. I spent most of my teenage years trying to get to New York City,but disability made it very difficult. California is a little bit more accessible, and I’ve gotten to audition for modeling and acting gigs here. I’m auditioning as a wheelchair user for roles that are not meant for wheelchair users. I just got my very first modeling gig out here and it’s not specifically written for a disabled woman. I’m looking forward to seeing what is the next step on the west coast, modeling, and while I’m doing that, I am continuing with my nursing work in the school. We’ll see what happens after. My journey continues.

Saa:

I am so honored to meet you and know how you have turned your chronic illness into something positive that can help others struggling with similar issues. I love what you have done to empower yourself, break down barriers, and teach others to leverage mobility tools to make the most of their situation. We will be watching your future endeavors and wish you the best as you grow. Thank you for joining us and sharing your story. 

You can follow Ryann on Instagram @chronically_ry

Jackie Saa & Christie Cox

January 2023

[*We are using they/them and she/her to reflect both of Mason’s pronouns equally.]