Living with an invisible disability

Learning to live with and through Arthritis 

Image by: Auston Chhor

For the average Queen’s student, typing or writing notes during class isn’t something they have to stress about. Two years ago, it wouldn’t have been something I stressed about either. Starting off my adult years, most of my concerns were centered on being independent, making friends and attending as many parties as I could.

In November of my first year I began to experience odd body pain that felt similar to the body aches you get when you have a fever. It was hard to ignore and often distracted me. This is when I had my first experience with Queen’s Student Wellness Services. The doctor really had no idea what to do and told me it was probably stress related. As a remedy, she said try to find time to relax more. 

I continued to experience the pain throughout the year, until the summer when it seized. “It must have been stress related!” I said to myself. My questions were answered, or so I thought.

The Kingston cold resumed in second year and my symptoms returned worse this time. Mixtures of sharp and dull pain took over my entire body. 

It felt as if someone injected air into each digit of my hands and I couldn’t close them. So again, I went back to LaSalle. The doctor was again unsure of how to handle my odd symptoms. She called for an x-ray and blood test, ultimately referring me to my rheumatologist — a medical specialist  who deals with various joint and tissue related disorders. 

After a trip to Kingston General Hospital, I found myself in an office with most of its clientele in their senior years. The doctor examined my x-rays and blood tests, touched all of my joints extensively and did an ultra sound on my hands. The result — there was no inflammation, and no inflammatory markers in my blood.

“But, I have pain, my hands feel so swollen!” I screamed in my head. The doctor dismissed me, telling me to get tested for diseases like chlamydia, and many others that cause inflammation. “Come back in six months,” he told me.

I returned after six months of stiffness, intense inflammation and harsh pain, and was yet again told by the doctor that I was still not presenting any markers. In a similar fashion to my last visit, I was dismissed and told to come back in a year. 

Visit after visit, I held in my tears until I left the office to bawl my eyes out. My body told me there was something wrong, yet the trained doctors saw nothing. 

The physical pain wasn’t the only symptom I’d been experiencing, my social life was also being impacted. Few people knew about the horrible pain I’d been experiencing, so most of the time I just tried to mask it with a grin. I felt invisible. 

Two weeks ago, I saw my rheumatologist, and he went through his usual routine. He checked my hands and continued with his ultrasound. All of a sudden I heard a “hmm.” Then he casually said, “Well, I see some inflammation here.” He wiped my hands off and nonchalantly told me “you have palindromic rheumatism or arthritis.” 

I was in shock — finally a real diagnosis. “Maybe I’m no longer invisible,” I thought. 

There’s a catch though. According to the Arthritis Foundation, “Palindromic rheumatism (PR) is a rare episodic form of inflammatory arthritis — meaning the joint pain and swelling come and go. Between attacks, the symptoms disappear and the affected joints go back to normal, with no lasting damage. Half of the people who have palindromic rheumatism eventually develop rheumatoid arthritis, which does cause permanent joint damage.” 

The causes are also entirely unknown. Flare ups are a commonly used term, meaning one day you can wake up feeling okay and the next it feels like you’ve been hit by a train. Even worse, there’s no interventional treatment until it develops farther. Some people live like this for the rest of their lives, and due to the rarity of the disease, doctors still have no idea what to do with me. 

Essentially until my blood work comes back crappy, I’m going to feel like crap. The appointment ended with the doctor telling me “You’re in limbo, see you in a year.” 

Post-diagnosis has been the hardest part for me. The disease has progressed quite quickly and has affected me physically and mentally. There are still some nights where I stay up crying in pain until 3 a.m., and others where I lay awake frustrated with my new-found inabilities.  

During those nights I scoured the Internet, trying to find answers, and others who understood me. One night I found the website called “Arthurs Place,” a website and social network for young adults with arthritis. Although PR is quite rare, and every case of arthritis is individual, people across the world between the ages of 18-35 became my new confidants. Giving advice on pain management, coming to terms with diagnosis and sharing personal details. These people, made me feel less invisible.

But, how do I feel at Queen’s?

I’m currently in a studio course for my Fine Arts teachable. In the past, I would say this course was a ‘bird course,’ but now it’s proving to be my most difficult. In a studio class, everyone works simultaneously in an open space, where discussion naturally occurs. Often I hear things like “this assignment is easy.” Once again, I’m invisible. Nobody is like me.

So, next time you say, “that’s so easy,” or “I can’t believe you can’t do that,” think about people with invisible disabilities like me. Trust me, I wish I could still go for runs and practice art the way I used to, or even go to lecture without making sure I take a pain killer first.

Ability and disability aren’t binaries, they exist as a spectrum. Everyone has their own ability to do certain things, some better than others. Some may be obvious, but others may be more easily hidden. I felt alone and often still do, because nobody around me could understand what I was going through. But, you never know, maybe this article will help someone else feel seen.


Accessibility, Health, Lifestyle, Postscript

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