At the age of 11, a short conversation in my family physician’s office turned my world upside down. I was diagnosed with juvenile rheumatoid arthritis. This meant new doctors, new medications and a new disease that I had no idea about. Juvenile rheumatoid arthritis is a rheumatic disease that attacks your joints instead of outside viruses. You may have heard of your grandparents being diagnosed with arthritis but there are many different forms of it. Osteoarthritis is what usually afflicts the elderly population, but rheumatoid arthritis is different.
When I was first diagnosed, I was unsure of what to do with the large amount of information that came my way. All I knew was that my knees were the size of tennis balls and I didn’t know how to walk properly anymore. I had also developed a new party trick where I showed everyone how I wasn’t able to extend my arm all the way anymore because of the swelling in my elbow. I thought it was pretty funny at the time. Although I now had a diagnosis, I still didn’t feel that I had an answer because I still wasn’t able to explain my symptoms or my newfound disease.
My doctor had now given me a diagnosis and a plan of action, but what no doctor could ever explain to me was how to talk to other people about my disease. In having to tell my grandparents, friends and family, this would become the first lesson that having juvenile rheumatoid arthritis would teach me.
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Explaining an invisible disease is difficult especially when you’re in a self-blaming state of mind. An invisible disease is tough to explain and you often think it’s your fault for getting a disease. “Maybe if I had done something different, I wouldn’t have this disease” I often found myself thinking. That mindset is detrimental.
My grandparents were the first people my parents and I had to tell, as they live with us. At the time, they had just moved from India and held a conservative, Christian mindset. We were very nervous to tell them. It’s scary knowing that you will have a disease for the rest of your life and to have to share that with loved ones is all the more daunting. It’s hard to explain, but explaining my newfound lifelong disease to my grandparents who had spent their lives trying to prevent similar conditions was not something I expected when I began to see my swelling joints.
A very common fallacy held by many in the South Asian community is that the solutions to every problem can be found within your spice cabinet. While a lot of those items hold important health benefits for you, they can’t cure a disease. Over the years, I’ve used a lot of South Asian products to help keep my inflammatory disease at bay but I couldn’t live without my Western medication. Nonetheless, to this day, my grandpa washes his hands with boiling hot water because he falsely believes that it could prevent arthritis.
It’s hard knowing that my disease is something that my grandparents worked so hard to prevent. Despite my experiences demonstrating that you can live a great life with an arthritis diagnosis and that in fact, getting a diagnosis can improve your life, they treat getting such a diagnosis as if it was the end of the world.
It wasn’t the end of my world… It will never be the end of my world. I don’t believe it should be the end of anyone’s world. It seemed as if arthritis was supposed to stop me, but it didn’t. It empowered me.
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Within South Asian households, it’s often seen as the end of the world to be diagnosed with a life-changing disease. Being diagnosed at 11, I still had a lot of life to live.
The best way to describe the disease, I discovered, was with something called the Spoon Theory. The Spoon Theory is quite simple. It states that each person has a number of spoons, but with hindrances like arthritis, you have a smaller number of spoons than your average person.
I was always the kid that wanted to do anything and everything at once. Growing up, I played sports, joined clubs and worked hard at school. When I was diagnosed, my number of spoons decreased to less than that of my friends and peers. It was tough having something that couldn’t even be seen impede you and separate you from others.
I had to learn how to deal with my disease. Kinesiology Therapeutic Tape, Kalaya, tensor bandages. You name it, I’ve probably tried it. Once I figured out how to control my disease, it became much easier to do what I wanted to do. I was able to go out, see my friends and work in groups at the same speed as people around me. The fact that I could keep up with others meant so much to me.
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As I started school after being diagnosed, I wasn’t sure how to speak about my disease with my teachers either. As I got into high school, I became more vocal about my disease and how it impacted me at school. When I started playing rugby, I faced criticism because sometimes I was hurting and sometimes I wasn’t. Teachers didn’t really know if I was being serious when I explained that I was in pain because it wasn’t visible to them. If I couldn’t write, I was questioned about the legitimacy of my hand pain. Some teachers were very open and willing to learn but others weren’t. My rugby coach thought I was looking to get out of practice but my swim coach understood that my shoulder couldn’t rotate all the way even though it looked fine.
Over the years, I became more confident in explaining my pain but in high school, I was a little bit more reserved about the fact that I was even in pain in the first place. This led me to hide my pain not only from my teachers but from my family, my parents and my friends. I felt like it was just easier to not tell them about my pain at all. I had a couple of amazing teachers that allowed me to talk about my pain in a way I never was able to through writing and poems. I remember in grade 11, we had to write a speech about one thing that made us stronger and for a change I wanted to talk about my arthritis. My English teacher in grade 10, Ms. Lakhi, was actually the reason I felt empowered enough to write about it a year later. In her class, I was able to write anything I wanted. I could speak to her after class about anything. She understood my pain and was one of the first teachers to never question it. I think I made everyone, including her, cry with my speech because it was the first time I was so open about what I had gone through.
From the ages of 11- 17, I had hidden my rheumatoid arthritis from my family, friends and teachers, but that one speech showed me that regardless of how well I thought I knew my peers, there would always be people who supported me regardless of the fact that they couldn’t see my disease.
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My disease is not something I made up or needed to hide from people. I had found peace with my disease at that point, but how could I continue feeling that way with every obstacle that was thrown in my way? I found that I had to reframe how I looked at my disease and focus on how it empowered me.
My reflection showed me that rheumatoid arthritis wasn’t something that was stopping me from accomplishing anything but rather, something that made me stronger, smarter and more resilient than I was. It’s something that pushes me rather than impedes me. It’s given me friends that I never would have met without it. My best friend Julie lives in Ottawa. We met at arthritis camp. We felt lame at the idea of going to sleepaway arthritis camp at the age of 15. But that camp bonded us forever. These reasons are what makes me keep going, even when I can’t move or can’t climb up the stairs. When I hobble up the stairs, I think of how much worse it could be and everything that I am still able to do.
I work with my doctors now to find out what the best steps forward are for me. Next year, I’ll be moving out of the country and for the first time in my life, I’ll be without my parents, family and friends. My doctors will be back in Canada, and I’ll have to do this big thing called life all by myself. I’m not nervous at all, I’m excited.
I’m excited to see what I can do outside of my arthritis because finally, I’m at peace with my disease.
Photo courtesy of Trish Peters
