The story of Tricia
My name is Tricia and I have a rare disease called Thoracic Outlet Syndrome. For all accounts and purposes, I look like a normal, healthy, 24 year old. I live in the city, have my own apartment, commute to work everyday on the train, go on dates with my boyfriend on weeknights and go grocery shopping on the weekends. From the outside, it looks like just a normal life. But while I’m doing all of that, my body is experiencing intense and sometimes unbearable pain in my arms, back and neck almost every minute of every day.
I can’t clean my apartment because using my arms in any capacity for too long of a period causes extreme back pain that I need to lay down for 30 minutes to feel better. When I go to work in the morning, I start work at 7am so I can be on the train when it’s less crowded so I can have a seat. If I stand for more than a few minutes, my arms and back start to ache, my fingertips go numb and my legs shake from the effort of having to stand. When my boyfriend and I go on dates, we have to make sure I bring pain meds and that wherever we go doesn’t involve too much activity or require us to walk too far, otherwise I’ll be in too much pain to enjoy it. When we go grocery shopping, I’m not allowed to pick anything up that weighs over a pound. I can’t lift my arms to reach something on a high shelf and I can’t really carry any grocery bags. The effort of having to do any of these instantly causes back, arm and hand pain and sometimes my hands can go numb just from picking up a gallon of milk. These are all sacrifices and adjustments I’ve had to make to my life because of a rare disease I’ve had since I was 13, but only recently got a name and diagnosis for.
Thoracic Outlet Syndrome is a rare disease. It’s mainly caused by compression in the thoracic outlet (the collarbone area) which puts pressure on nerves and blood vessels that radiate out towards your back, arms, hands and neck. I currently have this compression of my arteries and my nerves and need major surgery to try and alleviate the pain. In the meantime, while I wait for my doctors appointments, I try my best to still enjoy life with this pain. It can be difficult, especially when other people assume I’m an able bodied person. I get judging looks on the train when I sit in the seat that says it’s meant for older people or persons with disabilities. The other morning on the train to work, an older woman shoved a medical bracelet that you can buy on the internet, in my face to tell me that she needed my seat because of her medical condition. I should have told her that I also needed that seat and she would have to ask someone else, but it was early and I was too tired to fight her so I gave up my seat. I know I shouldn’t have, but I constantly feel a stigma that because I’m so young I should be healthy, even though I feel like I’m fighting a constant battle with my own body everyday.Â
I try not to let Thoracic Outlet Syndrome rule my life. I have a medical marijuana license so I can do things like cook and clean without too much pain. I use the weight of my cell phone to hold open my book while I read so I don’t have to use my hands. I recently went to Disney in December and for the first time ever, I self advocated and got a disability access pass so I could enjoy the parks without having to stand in line too much. Despite having a rare disease, it doesn’t define me as a person. It is something that affects my life, but I won’t let that stop me from enjoying my life like everyone else. I’ve learned that self advocating is the biggest thing you can do for yourself when you have a rare disease. Rare Diseases are very hard to diagnose and find treatment for, especially when it’s an invisible illness. I’ll never stop fighting for visibility and treatment for rare diseases. After all, we all deserve to live a happy and pain free life. That for me, starts when I can get my surgery. My next appointment to schedule surgery is in April and I’ve never been more excited for a doctors appointment in my life