My story – Austin
If there were an award for the least coordinated human, I would win with a sweeping victory! I’m serious: give me a book, a sketch pad or an instrument, and I’m as good as gold – but put a soccer ball or a hockey stick in front of me, and you’ll find me eating the pavement in no time.
As you can imagine, gym classes were a nightmare, and I was forever getting injured – rolled ankles, twisted knees, sprained wrists… you name it. So after one too many injuries, my mom corralled me into a stuffy doctor’s office – surely children aren’t supposed to get injured that often!?
The doctor gave me one look over and declared it was tendinitis. End of discussion.
Of course, I never thought to bring up my constant headaches or digestive issues, the fact that I got dizzy every time I stood up, or the fact that my TMJ was so severe, my jaw was locked shut for a year and a half.
But with no further probing from the doctor, I left the office with what I thought was the answer.
I hobbled my way through grade 9 gym, and hung up my metaphorical exercise hat, relieved to never have to take another PE class.
It was around the time I turned 18 that I fell in love with weightlifting. It was something I was good at, something that didn’t require me to dribble a soccer ball or pass a puck, and something I really enjoyed – forget that I was always hurting myself again, who cared? I was having fun!
The stronger I got, the more I could push myself and the heavier I could lift. I was finally enjoying exercise for the first time in my life.
With hindsight, the fact that I was forever wrapped up in kinesiology tape or that I was dislocating joints left, right, and centre was probably not a good sign, but at the time, I didn’t care. I was in the gym six days a week, but I was in agony. The second my feet would hit the floor in the morning, I was overcome with pain shooting up my ankles into my knees and hips. I hobbled to the bathroom every day, feeling like an 85-year-old.
It was around this time that I came across a guy on Instagram who had a genetic condition I’d never heard of: Ehlers-Danlos syndrome.
I read his post explaining the condition and its symptoms, and I was quite honestly in shock. It was like he was talking about me, like he was talking about my body. How had I never heard of this before? How had no doctor ever brought this up to me?
I booked an appointment with my doctor, and after a whole lot of begging and pleading, he finally agreed to send me to a rheumatologist.
You see, up until this point in my life, I was used to getting answers. You go to the doctor, they run whatever tests you need, and they tell you what’s wrong. That’s the way doctors are supposed to work, right?
Not this time.
The rheumatologist I was referred to spent all of five minutes with me, declared there was absolutely no way I could have Ehlers-Danlos Syndrome, and sent me on my way.
I was devastated.
At this point, I’d had to stop exercising almost entirely because the pain was just too much. My digestive issues were so severe that they were taking over my life. I was so dizzy all the time that it took me 10 minutes just to stand up without passing out, and one of my organs had prolapsed. My body was falling apart.
This was the turning point. This was the moment I realized I was going to have to fight for answers, and I was going to have to fight hard.
After months and months of trying, I managed to get a referral to a second rheumatologist who agreed with me. She could see the extreme hypermobility in my joints and decided to send me to a specialist EDS clinic for diagnosis.
The subsequent years were a blur of test after test, doctor after doctor. After going a lifetime undiagnosed, I suddenly found myself with a diagnostic list as long as my arm: Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, mast cell activation syndrome… the list seemed to go on forever.
I had to learn how to advocate for myself, how to ask the right questions, and how to trust my own judgement. It was hard, and the doctors didn’t make it any easier.
I share with you my story because it is far too common – we go to our doctors expecting help and are either dismissed or given a wastebasket diagnosis without proper testing. Had I known about these conditions sooner, perhaps my health would not have deteriorated so drastically. I often wonder what my life would have been like had that first doctor done a bit more digging instead of writing my symptoms off as tendinitis.
Nevertheless, if even one person hears my story and thinks to dig a bit deeper, ask more questions, and advocate for more testing, I feel I’ll have done my job.