I was diagnosed with rheumatoid arthritis at 19 years old. I was a former athlete who stopped after high school when a “mysterious injury” in my hips made it too painful to swim or cross train.
[Spoiler alert: it wasn’t an injury, it was chronic illness.]
While looking for resources about my new disease, I stumbled across an arthritis-specific magazine filled with inspirational stories of others who were like me. I was eager to hear how people got through everyday life with arthritis – only, the more I read, the less I felt I could relate to these people. The magazine featured people with arthritis who ran multiple marathons, climbed the highest peaks of the world, and accomplished extraordinary feats of physical fitness. They were characterized as “stronger than their disease” and people who “could overcome anything.” Yet here I was, applying for a disability pass to help me as I struggled to walk across campus to class.
I felt weak, alone, incapable, and ashamed. I tried to live up to my former expectations. I tried to push through the pain and my physical limitations to keep doing what I always had before. I didn’t want to take meds, I didn’t want to eat right, and I didn’t want to go to appointments. I was only 19! I wanted to eat pepperoni calzones and Ben & Jerry’s with my friends at 2 AM after a night of partying. If I wanted to swim again, or even do a triathlon, I felt my young body should comply. I was flailing as I tried to hold on to my identity, but at the same time, I didn’t feel like I knew who I was anymore.
Finding Research
From 2013-2018, I had the privilege to pursue a PhD in Occupational Science. For my dissertation, I set out to explore what it looks like to live with an autoimmune disease as a young adult. I read books where researchers did interviews with all sorts of people with all sorts of chronic illnesses. What I found is that:
- Researchers made theories about how people’s conception of time changes: sometimes illness feels like it interrupts our life plans, and other times it feels like a positive life-changing experience (Charmaz, 1991).
- Researchers made theories about different kinds of “work” we do – work to manage illness, work to just get through the day, and work to find and maintain our identity (Corbin & Strauss, 1985).
- Researchers found that the process of accepting chronic illness (my rheumatoid arthritis) is both intertwined with and goes beyond the stages of grief (Telford et al, 2006).
These articles and books helped me to feel both seen and hopeful that someone out there was truly trying to understand what I was going through. I felt validated that living with a chronic illness is NOT unidirectional, but rather messy; and it’s okay to fall, get back up, and fall again. This research saw me beyond medication, beyond a number, and beyond inspiration porn (using my disability to make non-disabled people feel good) for fundraising – it acknowledged that patients are also young people trying to figure out what to do next.
I’ll be honest: I am still quite stubborn. I still try to push through the pain and my physical limitations, I still struggle to take my meds perfectly, I still don’t eat right, and I still avoid the doctor’s office.
The difference is that now I have a support system that encourages me to practice self-care and make healthful decisions for both my physical and mental wellbeing.
I have built a physical environment and flexible routine that allows me to have good days and bad days. I have learned the signs of when I stray too far from my self-management regimen, and how to get back on track without panicking. I am open with my doctor about how I am feeling, including when I am feeling rebellious toward the things I know I need to do to manage my arthritis. And as a researcher, I advocate for patients to have a say in their healthcare decisions and health research, as we are the only ones who know what everyday activities and thoughts look like with our disease.
I also have a newfound appreciation for those who share their stories about living with chronic illness – whether they climbed Mt. Denali, won Olympic gold medals, figured out how to get insurance to cover their medication, or started the 10th grade. Every experience has meaning, and every story can help improve healthcare and community support for the young people who come after us.
I am fulfilled being a graduate, a researcher, a mother, a spouse, a crocheter, a mentor, a patient advocate, and so many more identities that I didn’t know I would get to take on. And I am grateful to be writing a blog about what I’ve overcome.
It’s a healing process to share and be heard, as well as to hear others. And when we use our stories for advocacy specifically, we can workshop with peers and collaborate on how to get the purpose and message of our stories across to others. I am so excited and proud to be Co-Lead of YP AREA, where I can use my skills to lift up every young patient who has a story to tell.
