Chronic Pain
I’ve spent the majority of my life in pain, going from doctor to doctor with none of them knowing why I was in pain.
My journey with pain started at the age of ten with ankle pain. The doctor thought it was a sprain and was never too concerned about it. After two years of slight pain in my ankles I started experiencing high levels of pain in my hips. At first I was told that I had congenital hip dysplasia and needed a surgery to fix it. That doctor referred me multiple surgeons and specialists but none of them thought the surgery would fix my pain. Since I only had slight hip dysplasia, the doctors didn’t think it was causing my pain.
After 7 years, many failed consultations, and dozens of test I had a surgery on on my left hip. Going into the surgery the doctor estimated it would decrease my pain by 30%. This was the first time any doctor gave me glimmer of hope so I happily agreed to the surgery.
Waking up from the surgery was tougher than I anticipated, the pain and confusion you wake up in is alarming and takes sometime to calm down from.
After several months of recovery and physio I saw my surgeon again and was happy to announce that a good deal of my pain had subsided so we went forward with the operation on the other hip. After complete recovery from this second surgery I noticed a 90% decrease in my pain. This was so much more of an improvement and it improved my quality of life changed dramatically.
Now that my pain was much more manageable I was able to consider moving away from home to study music. This had been my dream for years but I knew it was going to be too much to be in a new city with no support system while in chronic pain. I ended up going to the University of Manitoba and had a spectacular first semester. During the second semester my pain slowly started to increase, it felt like the pain before which concerned me. Why was it coming back? I tried working out more, maybe if I had stronger muscles to support me the pain wouldn’t get worse. Unfortunately, that wasn’t the case and the pain kept increasing. Towards the end of my first year the Covid Pandemic moved all of my classes online so came home to finish up.
I was still in a lot of denial about the pain, I kept finding excuses as to why I was in pain each day, surly it wasn’t chronic pain again. After 8 months I started to come to terms with it but I was still committed to finishing my vocal training so I went back to Winnipeg September 2020. Almost everything was still online but I needed to be there in person for those occasional opportunities that I was able to have a choir or voice lesson in person.
By the time October came around it became apparent that we wouldn’t be able to do much of anything in person for a long while still. Through all of this my pain was still increasing until the point where I found myself in as much pain as I was before my surgeries. I knew I was going to need to be near my doctors and support systems so I moved back home and finished my school semester there.
Before this point, my plan had been to get my education degree in Winnipeg. I decided to keep working towards my degree here, I wouldn’t be able to specialize in music but at least I could still get my teaching degree. I took a year and a half getting my pre-requisites and applying for the program.
I was able to start the program in 2022 but due to my health I had to transition to part-time January 2023.
Since my surgeon was in Edmonton it took about two years to meet with him because they were not seeing patients from out of province. During this time a saw more specialists, got on medication, got referred to multiple pain clinics, and started physio again. When I was able t meet with him he said the surgery had failed and he didn’t know why. Once again I was turned away by a doctor after they had tried everything they could.
Mental Health Challenges
Through all of this I struggled with my mental health; going in and out of depressive episodes, trying to diagnose and treat my ADHD, and experiencing a lot of anxiety around my disability.
When the pain gets too much I will often need to spend hours or days laying in bed and will struggle to do anything physically or mentally taxing. Laying in bed and doing nothing will often make me feel useless and hopeless. Although my brain and my body needs the constructive rest it will often lead into a depressive episode. Although I can’t stop depressive episodes from happening I am often able to decrease the severity of it by finding ways t get effective rest while filing my mental cup. For example, doing easy puzzles, listening to a podcast or audio book, colouring, or journalling.
Chronic pain puts a strain on mental cognition and limits the brain’s ability to process things as effectively because it’s trying to process the pain. This is called brain fog. Growing up I struggled with my attention a lot (even before my chronic pain). Looking back I recognize that I most likely had untreated ADHD, I was able to find coping mechanisms that helped me succeed through school after I got to high school but when my pain came back this time the brain fog was a lot worse and amplified my ADHD symptoms. I was able to get a diagnosis from my doctor and we tried many medications. Unfortunately we have yet to find one that works for me without unpleasant side effects. To navigate this I lessen my load to give my brain more time to process things and acknowledge and give myself space when my brain hits a wall.
Since my disability is invisible I face a lot of judgement and assumptions from others. Walking aids help on high pain days and make my disability more visible. I don’t always use my walking aids because they don’t always help, this will often confuse people and lead to assumptions of questions. I have been able to navigate the anxiety I feel towards my disability through self-compassion and perspective. I also need to pick my battles through this