Growing Up with an Autoimmune Disorder (age 2-10)

What I’d like people to take away is, when I was a kid, having arthritis was much easier psychologically than having arthritis when I was older. It was frustrating, painful, and terrible, but because I didn’t know any different, it didn’t get to me mentally. This is really important to remember if you’re the parent of a child experiencing chronic illness. At least from my perspective, children can adapt much easier psychologically, because they don’t know what they’re missing out on. I know my mom cried every time we went to the doctor when the doctor wrote down how many joints were still active. I didn’t cry. It was harder on her. So when you see your child suffer, remember, (for me at least), it wasn’t as difficult as it is for you watching.

For those of you who aren’t sick, remember that chronic illness is often invisible. Remember that you never know who is having a worse day than you because most problems are invisible.

When I got older, on the other hand, things got more difficult, but I’ll explain that another day. And remember! ALL OF THIS suffering was preventable, and the arthritis was treatable, so you or your friend or your children or relatives shouldn’t have to be suffering through this anyways!

I wrote this last year, it’s a short overview about some of the things I went through with arthritis as a child:

I was born in Montreal in 1992. We moved to Boston just before I turned two. My dad used to pick me up and put me on his shoulders when I was about two. When he took me off I would sit down and cry. My parents figured it was because I didn’t want to be put down. We now think it was the first sign of hip pain. He stopped picking me up and putting me on his shoulders. Unfortunately, the problem wasn’t that easily solved.

When I was five we moved to Toronto, (where I live now). When I was six I started lagging behind my parents and younger brother when we were walking. I had a hard time waking up in the morning. My parents told me to stop acting like a witch due to my mood. What can you do when you think your kid is acting up? You have to train them to be strong. This is one of the things my parents regret.

Then I started going down the stairs one foot at a time. I cried every day after school. I was a very happy child, but I started being not so happy when I was six. My parents attributed it to moving away from Boston. Eventually, I was taken to a doctor who told my parents to take me to a physiotherapist. After a couple of tests, my physio told my parents I had juvenile rheumatoid arthritis. My mom got angry. That’s the stage after denial when a person grieves.

I can remember being in the physio’s place at U of T having electrodes on my body. It was fun, it was exciting. My mom brought me back to the doctor we had seen, and the doctor told her to take me to emergency at Sick Kids and ask for a rheumatologist (that was the only way in). We did and I met Dr. Bonnie Cameron. She was a wonderful doctor, very meticulous about checking all of my joints. I had 37 active joints. That means joints where there is visible inflammation. She told my mom that I would need multiple joint replacements at a young age. I didn’t know what that meant and can’t remember it. Mom only told about it last year.

I was put on Naproxen and Methotrexate. I remember tasting the liquid for Naproxen. It was disgusting and yellow. I got a spoonful of ice cream or yogurt after each spoonful of medicine. For years whenever I saw that shade of yellow I would get incredibly nauseous. My appetite disappeared in the morning and I stopped gaining weight. I had to learn how to take pills. I was 7 and this was difficult. I had to sit on the stairs and try to swallow folic acid. Folic acid is a hard pill to swallow! It’s a tablet. I remember having it dissolve in my mouth and hiding it on the stairs and telling my parents I had swallowed it. The first time I successfully took a pill I was watching the Simpsons and just took it. It was such a relief.

At school I sat on a chair when the other kids sat on the carpet, because I couldn’t sit on my knees, or cross-legged. I was special so that was cool, no peasant carpet for me. I used a grip to hold pencils. My teacher Ms. Kelly was awesome. She also had rheumatoid arthritis and told my mother that bananas seemed to flare hers up. I can remember cracking my knuckles at my desk. The kid next to me told me if I kept doing that I’d get arthritis, I told her, haughtily, that I “already have arthritis so bug off”.

I had joints injected with cortisone in grade 3. I remember being in the surgery room before being put under. I remember holding a stuffed animal with my parents there. I remember having laughing gas and seeing people’s faces stretch. My great Aunt Margaret bought a stuffed monkey after the surgery, and it came with me to all my doctors’ appointments after that. I brought it so my mom would have something to squeeze when they wrote down how many joints I had inflamed. The joint injections really helped, after 2 days of not moving I could run around again.

At some point in grade 3 my big toe swelled up a lot and I couldn’t walk. We measured it. We were living with my parent’s friends before moving to the new house we had bought. One of the people we were living with asked if I had been eating anything different. I was eating a lot of clementines. I love clementines. We cut out the clementines and made an appointment with the rheumatologist. My toe returned to normal before we saw the rheumatologist. My mom asked Dr. Cameron if my arthritis could be food induced and she was laughed at. How wrong that was. I can’t imagine being a mother and having a sick child and then being laughed at for asking an innocent question. Then being proven right 15 years later. I would be murderous.

My rheumatologist told us of a new medication that hadn’t been approved for children yet. Enbrel. It was in injection form. Just subcutaneous injections. I practiced giving injections to an orange in the doctor’s office. I was 8. It was eventually approved and I was the first kid in Canada to be able to do Enbrel. Thank god for Enbrel. The other option was Prednisone but my mom refused. She wanted me to change my diet but the doctors told her that was crazy, dad told her that was crazy, and it really did seem crazy. Nobody’s body could be destroying its own tissue due to food. That’s crazy.

We moved to Olive avenue December 1999. A nurse came to the house to give me my first injections. 1 clear one for Enbrel and 1 yellow one for Methotrexate. I was scared but I didn’t show it. She taught mom how to give me injections. Months later my dad told me he’d give me 50 dollars to do my own injection. It took me 30 minutes. It was so scary. I missed a Simpsons episode trying to poke myself. Hurting yourself is hard. I was only 8. I managed to do it. The next time it took me 10 minutes and I got 10 dollars. Then I got 5 dollars for each injection after that for years. It made me nauseous. I almost threw up every time I had to do an injection. I think it was from that yellow colour. The smell of alcohol wipes used to wipe off a spot on your thigh also made me nauseous.

We went to the zoo at one point and rented a wheelchair. It was too much for me to walk around.  The difference between a kid and an adult is: I thought it was fun. Mom’s heart must have broken seeing that, but it was special for me. 

The next time I got cortisone joint injections I was in grade 4. I pretended not to be scared because I knew my mom was scared. I was so scared. When they gave me laughing gas I took really deep breaths too fast to make sure it worked but instead I hyperventilated. When they put the needle in my arm I thought it was about a cm thick from the laughing gas making me hallucinate a bit. They told me my stuffed animal monkey would be there after the surgery but I can remember them taking it away. I’m 24 and writing this is making me cry. But the injections helped again and I went to play sports during the summer.