Reflecting on My 20th Anniversary With My Rare Disease
Last updated: November 2023
My life was upended because of a viral infection 20 years ago.
In the fall of 2003, I was working in a children's hospital, and I had many contracts in my field of backstage tech. My career was my passion, my work was appreciated, and the future was looking bright.
I was involved in provincial politics and often went dancing, to the movies, and to restaurants with friends. I would spend as much time as possible with family. I lived alone with my big white cat in an apartment I liked a lot and had just got a "new" used car.
The day it all began
On October 22, 2003, I caught a viral infection at my hospital job. I had to call in sick for the first time in 5 years. I had a sore throat, debilitating fatigue, horrible headache, dizziness, and weakness. Still sick after a week, I was tested for strep, influenza, and mono – all negative.
After 2 weeks and still not feeling any better, I got a diagnosis of "post-viral syndrome" and was told to rest. Without a diagnosis, it's very hard to get help, social support, or financial assistance, so I had to try and go back to work quickly.
I had to stop doing the work I loved
I soon had to quit my main job in the hospital's ER because I wasn't getting better from that "post-viral syndrome," and I wasn't able to stand or sit for more than a few minutes.
Similarly, I stopped doing stage-managing because while I always found joy in that complex and fast-paced work, which I was very good at, it had become arduous, causing anxiety and frustration.
I tried to continue working my second job in the hospital's archives but quickly realized that my brain fog (an expression I didn't know yet) was too intense to allow me to function. Even with the support of my colleagues and accommodations from my superior, I didn't even have the cognitive ability to put the medical files in numerical order.
I wanted my life back
That's when the battle to get a diagnosis started. I didn't want a paper to miss work. I didn't care to have a name for what I had. I just wanted to get better! I wanted to stop being in so much pain and feeling so awful. I wanted to be able to do what I was passionate about!
As the weeks went on and I kept pushing my body's limits (having to do the grocery, taking care of my apartment, trying to work again and again), I started fainting. Each week, I could do less and less, not more.
Feeling hopeless about the future
I have a bachelor's degree in psychology, and I didn't see in myself the signs of depression, but doctors had started to tell me, "It's all in your head." To be honest, I was hoping that was the case because that could be treated with antidepressants and therapy.
Of course, the psychologist I saw told me I seemed close to depression. Illness was stealing my life; I was in pain and felt awful, and my finances were in ruin. I had to move back with my parents. I had to say no to a theater contract in Europe. I lost all my friends but 2. I had to sell my car, and more.
And without a diagnosis, I had no hope of one day getting better. The future had become a dark tunnel with no light at the end.
Pushing for answers
But there was clearly a physical problem. That psychologist helped me a lot by insisting, "Go see doctors until you find the one who will find the answer."
It took years and dozens of appointments, tests, and specialists. But most of all, it took long hours searching the web and reading scientific articles before I got a diagnosis: Ehlers-Danlos syndrome (EDS).
Once EDS was identified, suddenly I was taken seriously and I started getting a dozen comorbidity diagnoses (osteoarthritis, arrhythmia, tinnitus, etc.).
Treating my postural orthostatic tachycardia syndrome
The virus that triggered and disabled me so much is called postural orthostatic tachycardia syndrome (POTS).
I got a treatment for POTS, which helped me a lot. It allowed me to dance again (a little bit), go to China in 2010, hang out with my musician friends, and do volunteer work. I could even work (from home, at my pace and very part-time).
Sadly, I accumulated other health issues through the years: rare diagnoses like autoimmune polyendocrinopathy, corneal ectasia, and systemic autoinflammatory disease (which I've had since birth), and common problems like kidney stones, gallstones, and uterine pre-cancer.
But since 2021, I'm doing well. In part because I haven't had any infection in 3 years, and my health is quite stable now (*knocks on wood*).
Why this 20-year anniversary matters to me
When I got that infection 20 years ago, I thought I'd get better in a week or 2. As the issue persisted, I hoped for a long time that I'd get cured when we found the cause. But when it became obvious that it wasn't going away, I never would have believed that about 15 years later, I'd be where I am now – that I would be happy, with a spouse I love, and that I could work so much or do such a gratifying job!
It's important to highlight that 20th anniversary, even if it's one that isn't nice. Most of all, I think it shows the importance of not giving up, that it's worth it to fight for diagnosis and treatment, and that we need to stay hopeful because life can hold good surprises!
How do you feel about your support system?