Submitted by: Teresa Geary
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. My health deteriorated, in some ways visible and in some invisible. I struggled for years, while working as a nurse, with increasing fatigue, pain, nausea, injuries and other health issues. I developed cardiac dysautonomia.
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, stop volunteering with an organization that I loved, 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. I now live in long term care.
After this, many of my symptoms progressed including gastrointestinal and urological symptoms. I developed sepsis a couple of times which, on more than one occasion, was near fatal. In the last two years, I have been in the ICU multiple times and I have spent more time in hospital than out. I am currently in hospital. I was finally diagnosed with Addison’s.
Thanks to these experiences, I learned a few lessons. 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. I am now learning to pace myself.
Secondly, even with a visible disability, the world around me in Southern Ontario, Canada, was very inaccessible. While many places will put the 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 improving, it is still very difficult in many areas of Canada to find a care provider who understands EDS. 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 grateful for my friends who have been with me through some impossible situations but also through some great successes. This is also where the Canadian EDS Foundation step in. Their commitment to increasing care, access, research and education for those affected by EDS is unwavering and makes a world of difference.
I have worked to increase awareness of EDS, including lighting up the CN Tower in Toronto, and the Indian River Inlet Bridge in Delaware, USA, in orange for Awareness Month in May 2025. We were able to light up both monuments for May Awareness 2026 as well. The CN Tower will be lighting up May 25, 2026!