Growing up, I was so bendy and flexible. I was an elite figure skater, competitive rower and competitive swimmer. I had no idea that the braces I had to wear, the injuries I was prone to, and the constant pain that I was in, were due to a syndrome that would later explain the progressive physical disability I was going through.
As an elite athlete, I also pushed myself through injuries and pain (such as training on a broken ankle) which led to a lifetime of pushing through pain and exhaustion as my later Ehlers-Danlos syndrome (EDS) worsened. I had no idea as a child that living in constant pain was not everyone’s experience.
After retiring from figure skating due to injuries, I went on to university and became a Registered Nurse (RN). My health deteriorated, in some ways visible and in other ways invisible. I struggled for years, while working as a nurse, with increasing fatigue, pain, nausea, injuries and other health issues.
I developed what would eventually become comorbidities of the EDS such as a cardiac dysautonomia. While meeting the diagnostic criteria for EDS, it took a long time to finally be diagnosed. I was diagnosed shortly before having surgery for a cerebral aneurysm. During this surgery, I survived a stroke. I became a full time wheelchair user shortly after.
I had to move out of an apartment that I liked, stop working as an RN which I loved doing, adjust to being a wheelchair user, adjust to being less independent and move into a retirement home, which at age 36, I was not ready for. The entire process really contributed to the worsening of my mental health, significantly worsening my quality of life.
After this, many of my symptoms progressed including gastrointestinal and urological symptoms and I developed sepsis a couple of times which, on more than one occasion, was near fatal. I was finally also diagnosed with Addisons.
Thanks to these experiences, I learned a few lessons very quickly. Firstly, there are so many kinds of disabilities including those that are dynamic and those that are invisible. Often, your body will try to cooperate on some days while fully stopping you on others (“But, you could do it yesterday…”). A picture of an iceberg also comes to mind when describing the disabilities that people can see and the many disabilities that are beneath the surface. The invisible disabilities (“You look fine…”) are debilitating and can be so isolating. Most people just don’t understand. Therefore, I learned quickly to push through just about anything.
Secondly, even with a visible disability, the world around me in Southern Ontario, Canada, was very inaccessible. While many places will put the well known blue wheelchair sticker in their window, they are not truly accessible with, for example, no accessible bathrooms.
Thirdly, many people assume wrongly that access to care and support is always there. While significantly improving, it is still very difficult in many areas of Canada to find a care provider who understands EDS and to find support. As someone with a disability, I am mostly given a fight against ableism, paperwork and financial difficulty due to costs associated with accessibility and healthcare.
Finally, and most importantly, I learned that having a support system is essential. For example, I have been immensely grateful for my friends who have been with me through some impossible situations but also through some great successes. This is also where The Ehlers-Danlos Society steps in. They have been a huge source of support. Their commitment to increasing care, access, research and education for those affected by EDS is unwavering and makes a world of difference.
Through the challenges put out by the Society, I have worked hard to increase awareness of EDS and HSD, including lighting up both the CN Tower in Toronto, Canada, and the Indian River Inlet Bridge in Delaware, USA, in orange for Awareness Month in May 2025. I remain an inpatient in hospital at this time and have been for ten months after a near fatal sepsis, but I am fighting hard to get the strength I need to go back to the retirement home. Through all of this, I am so grateful for all of my EDS healthcare team, my friends who are a huge support, and for The Ehlers-Danlos Society that supports all those affected by EDS and HSD worldwide.
