Pain will always be apart of my life

Queen's way of dealing with chronic pain remains inaccessible

Feeling as if your disease is invisble on campus.
Credit: 
Photo illustration by Nicole Langfield

When I woke up last Sunday morning, I knew it was going to be bad.

Within seconds of waking up, the soreness has already spread from the joint connecting my spine and hips. This feeling radiates up my back and around my abdomen, also sending spikes of pain down the backs of my thighs to my knees. 

On Monday, I can barely move. 

I don’t go to my classes. Instead, I do my physiotherapy and stretches and do my readings in bed in the brief moments I have between periods of exhaustion.

Come Tuesday, I have no choice. 

Wearing the easiest clothes to fit over the chemical heating pad that’s stuck to my lower back, I carefully make my way to campus. I have to hand in a written assignment and then attend an important seminar in a required course. Even with the accommodations I’ve been granted, these aren’t things I can afford to miss if I want to graduate by the end of April. 

By the time I finally make my way home, each step sends painful tremors from my hips. The rest of the day is a bust. If I’m lucky, I’ll have the energy to make dinner, but my only goal right now is bed.

For me and the thousands of others who suffer from chronic pain and illnesses, Tuesday is an everyday reality. It’s waking up in the morning and recognizing you have to make a choice between exacerbating your pain or giving up your school, your work, your friends and life. Being in the final year of my undergraduate degree, the thought of having to put all of my efforts and dreams on hold after years of work is almost as bad as the pain of my illness. 

When I first started experiencing bouts of pain in October of 2016, I initially figured I’d just pulled a muscle or spent too much time sitting in an awkward position. At the time, I was highly active; biking to and from school daily and going to the gym three days a week, so a related injury was the only logical conclusion.

But a month later, what had started as a couple of hours of discomfort quickly turned into having to go weeks without relief. 

I’d wake up in the middle of the night without warning feeling like my joints were on fire. One time during a movie with friends, the pain became so bad that I blacked out for almost a third of the film. As the days got colder, going to class became harder and harder until I consecutively missed an entire week, barely leaving my bed.

What followed was six months of doctor’s appointments, blood tests, genetic testing, x-rays and MRIs. In the end, the results revealed inflammation and pockets of fluid stemming from the sacroiliac joint between my spine and hips, as well as a genetic defect marker that signified a strong relation to auto-immune and inflammatory disorders. By May of 2017, I had a tentative diagnosis and a treatment plan.

But being given a long, medical name and some pills isn’t the end.

Chronic illnesses like my own have no cure and successful treatment of symptoms is sporadic and experimental. Pain management is a ‘Band-Aid solution’ since conventional painkillers lose their effectiveness over time and powerful medications often come with dangerous side effects including addiction. Medications designed to stop or delay the progression of such diseases — known as biologics — are experimental, can take years to find the correct one and are rarely covered by government healthcare or insurance. This can force patients to seek compassionate coverage or pay thousands of dollars out of pocket for a single dosage. Even with medical innovation, just a glance at online support groups shows a strong narrative of self-medication, unemployment, depression and suicide as a result of the diseases.

Most of the time, my pain isn’t visible. After finding a medication that works for me, I generally can go through my days now with limited mobility problems. I can go to class, take the stairs, ride my bike or walk to and from campus. If I end the day more sore and tired than most, it isn’t obvious. With the exception of those who were in the loop before my diagnosis, few know or ever notice something is wrong.

But this isn’t always the case.

Times like last week, when the treatment isn’t enough — known as flares — are just something that will continue to happen in my life. Before this, I’d gone the entire fall term without my condition impacting my ability to live my life. But the pain I awoke with on Sunday morning served as a stark reminder pain will always be a part of my life.

Living with chronic pain has highlighted to me the ways in which Queen’s — even with its services, movements and options — remains inaccessible. 

There’s no option within Student Wellness and Accessibility Services here which would allow me to complete my degree in a way that doesn’t cause or worsen my pain in some way. And even if there was, if I could take all my classes and exams from the comfort of my bed, participate in events and activities with a mobility device or through a futuristic robot and maintain a social life through the wonders of social networks, would I want to? 

The choice between living without pain and experiencing life doesn’t have an easy answer. 

Knowing how difficult I find my situation now and realizing just how much harder it’s going to be in the future is terrifying. Reaching the end of university is a scary experience under any circumstances, but not knowing if you’ll even be able to chase your dreams after putting in all this hard work? It goes beyond fear.

My greatest hope lies with knowing that even though there’s currently no cure or solution, things are bound to get better. Stories like mine push action in accessibility movements and services, increase awareness and reduce ignorance of chronic and invisible illnesses. They can often be the inspiration for new innovation and progress in medical fields. 

Even if it doesn’t come within my lifetime, there’s a strong belief many chronic conditions could be cured or prevented within a generation thanks to new technologies such as genetic therapy. Even Queen’s has labs and research teams studying people who suffer the same way I do and working on cures.

For now, there’s little I can do but hope. Still, hope is sometimes a better medication than anything I can get from a bottle.

 

Corrections

February 10, 2018

The headline and kicker of this story have been updated due to the similarities to an article from The Journal's past. 

The Journal regrets the error.

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