TALES FROM HUMBER: Chronic disease sufferers need patience, compassion

Oct 14, 2022 | Tales From Humber

Going back to school at 29 was never part of my long term plan.

I spent many years working with young children. I loved my job, I even had the opportunity to work in Tanzania, but life had other plans.

For as long as I can remember, I have lived my life with chronic pain. I was born with a rare neuromuscular disease, which became apparent when I was five years old, and my wrists were weak.

I spent my life in elementary school using a wrist brace whenever I had to write with a pencil. At nine, the disease progressed and I was diagnosed with scoliosis, and then finally at 29, I lost almost all of my mobility in my right shoulder.

The shoulder issue basically happened overnight. At the time I was working with toddlers, and I suddenly found myself unable to meet the physical demands of the job. I could no longer lift my right arm past my ear, holding anything heavier than a two-litre soda was impossible.

Acknowledging my physical limitations was emotionally very challenging, but I tried to make the best of it. I went into journalism because I love to write, and hear other people’s stories. However, going back to school after making a comfortable living for so many years felt like a punch in the gut.

It’s been a couple of years now since I lost mobility in my shoulder, and luckily I’m in a much better place. I get steroid injections every four months directly into my shoulder, which will temporarily give me pain relief, and a bit more mobility.

I have an incredible physiotherapist who gives me acupuncture for temporary relief. I’m also closely monitored by an orthopaedic surgeon and a neuromuscular specialist.

Trying to balance school on top of so many medical appointments and severe chronic pain can at times be challenging. Some days I wake up in so much pain that I can’t even make it to class.

Falling behind, and the anxiety of not being able to catch up, has not been easy to easiest thing to deal with. It makes me worried about what the future may look like once I am working in my chosen field. It’s a given that for me there will be days when I won’t be able to get out of bed, and because my neuromuscular condition is progressive, I’m not sure how it will manifest in the coming years.

I can’t change my situation, it’s unlikely there will be a cure for my condition within my lifetime but acknowledging that I am doing the best I can do has been helpful. I really value the mindfulness techniques I learned through my pain clinic last year.

In the future I hope to see more advocacy for people with chronic illnesses.

We can work, and we can be successful, we just need the people who hire us to give us a chance. So many people with chronic pain need all of their energy to even get out of bed some days, and all I can hope for is that my professors and employers can understand that and show us a little bit more patience and compassion.