What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
I was ridiculously busy lol! I had just finished my university degree (Bachelor of Fine Arts) and was working full time as a charitable fundraiser. I had also moved from the east to west coast of Canada and had plans to travel and backpack around the world with my previous partner.
What would you do if you were not dealing with your invisible illness? *
I would love to work again haha as lame as that is! After my pain became more chronic, I started running live painting events in Victoria & Vancouver BC. It accommodated the pain since I could mostly work from home, while I was trying to get an accurate diagnosis. As my pain became worse though & I received the TOS diagnosis, I had to make some changes so, I left a job I loved. I also am a painter with arm pain lol the irony is real, so I haven’t been able to make as much art as I’d like to over the past few years. Or be as social as others my age (especially with being sober for health reasons too oy). In the future I would love to maybe do a Masters in Fine Arts, or even become a tattoo artist!!! But it’s mostly up to my body at this point, which is really hard to plan around.
What would you like people to know about your daily life? *
It’s really difficult & chronic pain is painfully consistent. For years I was misdiagnosed and brushed off since my symptoms are invisible. I had so many scans and tests done but they were all normal. I saw countless specialists who said they couldn’t help me, and tried every possible painful treatment with no success. It really felt like I was going to be in pain forever. I had to keep advocating until finally I was diagnosed with a rare illness, but there’s no cure. I felt alone for a really long time and have lost a lot due to illness, so I just want others to know that it’s okay to not be okay! Your pain is 150% valid and just keep trying to take care of yourself the best you can.
What would make living and moving in the world easier for you? *
Less pain in my arms! Thankfully I recently had major surgery which has really helped my symptoms! In the past six months I’ve had both my first ribs removed to alleviate the compression of the nerves and veins that go into my arms. There was no guarantee it would help, but my recovery has actually been really great! Super painful lol but impressively worth it! After years I finally have some relief. Now I just have to focus on continuing to recover and try to regain what I’ve lost while also not overdoing it. Easy right?lol
Do you have any life hacks? *
Listen to your body! Rest when you need to and don’t push through pain. It felt like my pain was all in my head for a few years and I was so hard on myself. It took a lot of therapy and grieving to just accept my situation and listen to my body. I wish I would have even sooner to prevent some of the damage, but I’m glad I kept trying. Keep advocating until someone listens!
What kind of support do you get from family or friends? *
My partner and parents are fantastic! But outside of that I don’t get much support since I’m not close to most of my extended family. Also having an incurable chronic illness in your twenties is super uncomfortable for a lot of people. Which I understand! I also have a few long time friends that have been great, but I’ve also lost a bunch too.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
95% of doctors I saw didn’t believe me. Regardless of how much pain I seemed to be in, they’d think I was overreacting.
How has your invisible illness affected your relationships? *
My previous partner didn’t understand and took it personally that I couldn’t do certain things anymore (especially since traveling was a big part of our relationship) but my current partner has been great! Supporting me through all treatment, tests, surgeries and tears lol I thank him all the time for not leaving. I feel very lucky to have him!
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Before diagnosis, 100%! Now because TOS is so rare I’m met with confusion or support since I’ve had invasive surgeries now I’m taken a bit more seriously.
What is your best coping mechanism? *
What are you the most concerned about and the most hopeful for in the future? *
I just don’t want pain to impact everything I do!
What is your favorite swear word?
Fuck, classic lol
What is the hardest and/or best lesson your condition has taught you?
To be a lot kinder to myself and honest with others. I used to have a lot of social anxiety and would make decisions to please others. Now my main priority is myself and that’s pretty great!
What is the best purchase under $100 that helped your life
Tattoos! I like to think that they’re a representation of making pain beautiful.