What I Should Have Told the Reporter Who Asked, ‘What Is Arthritis to You?'

A news reporter asked me on air, “What is arthritis to you?”

Silence. I fought to get the words out, and I struggled to come up with an answer to such a blunt question. All I managed to say was, “It’s my life…” We sat there in silence for 30 seconds as he waited for me to give a more thorough answer.

…But I had nothing else to say. Ever since then I’ve been grappling with the question, “What is arthritis to me?”

Juvenile: because I was a child. Idiopathic: because no one could tell my parents why. Arthritis: because I was a child in what many people associate with a “senior’s” body, because my body was self-destructing.

When I was 4 years old, arthritis meant yelling for my parents from my bed because I couldn’t walk. It meant my dad had to help me walk like I was a toddler. It meant swollen joints and a pain I can still remember to this day. When I was 4 years old, arthritis was a word I didn’t know. It meant physiotherapy and pain management therapy. It meant not being able to sit cross-legged on the floor with the other kids. It meant poking and prodding and dozens of doctors circling the room. When I was 4, arthritis was a hospital bed.

When I was 10 years old, arthritis meant being teased at school because I was allowed a chair in the school assemblies. It meant buying Tic Tacs at the grocery store so I could become an expert at swallowing the cocktail of pills I was prescribed. It meant eye tests for uveitis and cortisone injections. It meant being “different” in a world where kids are unkind if you’re not like them.

When I was 13, my arthritis meant remission. I thought I was cured. Everyone else thought so, too…

When I was 18, arthritis meant an intense relapse. It meant a literal overdose of medication. It meant chemotherapy medications, and it meant hair loss. It meant mono. It meant sickness and infections. It meant deferred exams, missed classes and doctor’s notes. It meant rapid weight loss, then rapid weight gain. It meant quitting all physical activities and more cortisone shots. It meant weekly blood tests and needles. It meant surgery. It meant seeing my parents and doctors cry together. It meant lying on the couch for months on end because my body couldn’t fight for itself. It meant weakness. When I was 18, arthritis meant my life was turned upside down.

At 23, my arthritis is still a character in my story, but its meaning has changed. It means making the best of the good times, and it means going on with life because there are so many positive things coming my way.

In retrospect, I guess this means I answered the reporter’s question accurately. What is arthritis to me? It’s my life. It’s my morning, my afternoon and my nightlife. It’s my everyday life.

What I failed to answer that morning was this:

What is my arthritis to me? To me, it’s a challenge I accept. It’s a reminder to never give up. It’s a reason to choose health over everything else. It has led me to discover my life’s goals and passions. It has shaped me into the person I am today. It seems odd to say to someone who doesn’t understand, “It’s my life,” but to me, it means so much more.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.