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Chronic Pain Education

What is chronic pain? According to Health Canada, chronic pain is defined as “an unpleasant sensory and (or) emotional experience typically associated with physical damage to the body. Chronic pain is when the pain lasts longer than 3 months.” (Health Canada, 2022). For the World Health Organization, chronic pain is more than a symptom, it is categorized as à disease, due to its impact in people’s lives. There are 2 types of chronic pain: primary pain and secondary pain. Primary pain persists even after the body has healed, and there are no identifiable causes (ex: pelvic pain, lower back pain, fibromyalgia). Secondary pain occurs with an underlying disease or injury such as cancer treatment, arthritis, post-surgical pain, etc. Did you know that nearly 8 million Canadians live with chronic pain? For people living with this condition, the pain is beyond physical, it affects their emotional and social life’s. Pain is such a unique and individualized experience that it could be influenced by many factors, biology, psychology, emotions and more.

Chronic pain isn’t always visible to the naked eye, which makes this an invisible condition to other people. Many don’t understand the pain, some don’t believe you and others you just become too ashamed to share that you have this problem, so you keep it to yourself. For many people including myself that experiences daily pain, it feels isolating. It becomes a challenge to access certain health services, there’s a lack of advanced treatments out there to support the condition and in many cases, you feel so misunderstood you stop seeking help and live in agony. Chronic pain isn’t “just pain”, it’s not like having a headache, or stomping your little toe. It has major impacts on one’s physical health as your body and immune system become inflamed, it affects your mental and emotional health, it has a direct impact on your job, finances, social interactions/ restrictions, your ability to do everyday tasks/ activities and of course, your sense of self.

Personal Chronic Pain story

This is honestly one of the most difficult things for me to talk about with people, for a multitude of reasons. First, I don’t think I’ve told a single soul my whole story, or the extent of the pain I endured as it required too much of me emotionally. Second, this has grown over the years into quite a disability that I am too stubborn to see as such and feel embarrassed to call it that. Working in this field, I see people with “real” disabilities, I know I just did that… considered my own experience to not be as real, but that’s what's happening in my mind, which is why I feel so much shame. I, in no shape or form, would ever want to take away from someone’s experiences or their own truth in relation to their chronic pain story. This is my story, and mine alone. I felt scared that people would see such a young, active woman and not believe that her body felt like she was 60 years old. For instance, when I took the city bus, I stood up for the elderly, pregnant females, and people with physical disabilities and yet, standing felt like absolute torture internally. It was easier to do that, than to see people’s disgust in their eyes if I decided to stay seated. I refused to get a handicap sign for my car, even though carrying heavy loads and walking was agony. I never asked for accommodations at work as I felt it was a waste of resources for someone else that would need it more than me. I asked myself questions such as “I can’t go for a hike with this friend, what excuse can I give without sounding horrible?”, “I can’t drive long distances without pain, how will I get out of this road trip?”, “I have to fly internationally, I need to think of a plan to sustain the pain”, the list goes on and on. My whole life revolves around this stupid unresolvable pain.

I have been living with chronic primary pain for almost 7 years. It all started back in 2016, I used to wake up feeling refreshed and energized as I often did. I had a perfectly well-balanced diet, I exercised in the gym 3-4 times a week, I felt healthy and put together and suddenly I felt pain in my right lower back. As the athlete I’ve been my whole life, I never let pain go untreated or unnoticed. I saw a physio, did some stretching, took a painkiller, iced it, and rested my back. The pain went away. Cyclically, the pain would decide to come and go, each time returning stronger than the previous time. I also exhausted resources on things such as ergonomic, massage therapy, acupuncture, osteopath, etc. You name, I’ve done it! Eventually, the pain came and never left. I can describe the pain as a constant burning sensation in my right lower back that worsens with prolonged activity or stationary positions. This means, no matter what I do with my body, this pain makes my life miserable. I can’t sit for long, can’t stand for long, can’t lie down on my body, I can’t climb stairs, I can’t bend, I can’t lift, I can’t do any form of physical activity without being in agony for hours on end. When I stretch or walk a certain way, a popping sound can be heard. As an athlete, stopping physical activity was like taking away breast milk from a breastfed child. My mental and emotional health took a hit, my body started to change over the years, and I juggled a million and one health appointments every month just to appease myself as nothing truly lasted in terms of pain relief. I had a rotation between chiropractor, physiotherapy, massage therapy, acupuncture, osteopath, yoga instructor and "sweets" for emotional satisfaction.

The medical journey

In 2016, when all this started, I saw my family doctor. Who was a horrible doctor by the way just for reference, who is now retired (thank God). And no, she didn’t retire because of old age, not sure why ‘til this day but I have a feeling it had to do with the series of complaints about her malpractice with patients. Anyways, she told me to take Tylenol and Advil’s, that I was TOO YOUNG to have back problems and that it would pass. I saw her multiple times from 2016 to 2018. When she got sick of me coming back, she prescribed me with different Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) over the years, which provided me with zero relief. Taking these caused fluid retention as well as caused some digestive issues that I’m still recovering from today. Then, she told me that maybe I needed to lose weight, I thought to myself “Oh no you didn’t”. I was 5’7 and I weighed 180lbs of pure muscle and African beauty then. I had a body fat of 20% which last time I checked meant I had a healthy BMI and normal fat percentage as a female. I got a referral to see a Sports Medicine doctor, which happened to be her little “golf buddy” who welcomed me with the same animosity and lack of understanding for my symptoms as she did. Why is it that age has to define whether my symptoms are real or not? I kept being told that I’m too young to have back pain. Yeah, well children at Sickkids are too young to have terminal illnesses, and yet here we are! Anyways, I had an MRI done of the lumbar spine, which came back clear. He suggested doing a cortisol shot into the SI joint. It was the first time I even had a slight idea of what might be wrong. After physical examination, he concluded that my Sacroiliac (SI) Joint (connects the hip bones (iliac crests) to the sacrum, the triangular bone between the lumbar spine and the tailbone (coccyx)) was irritated/ inflamed. After the shot, I felt relieved from my pain for exactly 6 hours, which was right before I went to sleep that day. He then told me to do stretches and that I should lose weight and increase my gluteus muscle so it would support my SI joint better. Thanks for nothing.

At this point, I was still trying to upkeep some form of physical activity, as I had been told to “lose weight” which for my genetic type, is very difficult if I do not exercise. Sometimes I wonder how I didn’t develop an eating disorder from all this trauma. In 2019, I moved to Toronto to continue my studies and work. The pain was so bad, I had to stop exercising all together. I had to choose between staying in shape or managing the pain. Mind you, I’ve always been a “clean” eater, so living a healthy lifestyle wasn’t forced on me. I did another MRI of my lower back, and the report stated, and I quote “Mild insertional gluteus minimus tendinosis” as well as “mild soft tissue edema in the right quadratus femoris muscle without significant narrowing of the ischiofemoral” (whatever that means). If anybody knows what this jargon means, please enlighten me, as all I was told by the physician was that I had a minor inflammation in the hip but that it should heal. Which I’m assuming did because my recent MRIs of 2021 and 2022, didn’t state the presence of such a thing. The recent imaging suggests that there are no musculoskeletal reasonings for my lower back pain. The most recent investigation was of endometriosis, as my back pain would feel additionally painful when I would menstruate. After months of working with an OB/GYN, trying hormonal drugs and performing a diagnostic laparoscopy, the result is that I do not have endometriosis which can’t be the source of the pain. As of today, my pain management specialist has derived that I have some form of SI (sacroiliac) joint dysfunction, with tendons in the joint that won't heal, causing the nerves inflammation. I've received injections to help it heal and if that doesn't work, I'll need some type of plasma replacement therapy which costs over $1500 as it's not covered by our provincial healthcare. Between 2020 and 2022 with all these ups and down, with a sprinkle of COVID-19 pandemic, I gained over 40lbs from just stress, hormonal imbalance, and depressive/anxious episodes, which are nearly impossible to fully lose if I cannot exercise. I’ve reached a medical peak and I’m walking a tightrope between losing my mind and staying resilient and hopeful.

Chronic pain and mental health

This is quite simple, living with daily pain that you cannot fix or ignore takes a toll on your mental and emotional health. We are not built to experience chronic pain that lasts longer than 6 months at a time. Due to the physical and mental stress that is to live with this pain, the “chronic” of it changes the levels of stress hormones and neurochemicals found in our brain and nervous system. These changes affect our mood, our thinking, our emotions and even behaviors. The disruption can lead to mood disorders, such as depression. Personally, living like this for almost 7 years has deeply affected me, and all I do is resist falling into maladaptive patterns to sustain a baseline of wellness. It makes it so difficult for me to engage in certain social activities, complete basic everyday functions, sleeping disturbances, always fatigued and persistent changes in appetite. I’ve had a harder time concentrating on tasks (has never been a problem in my life as I’m the definition of laser focused), my memory is affected, the things that brought me joy now bring me agony such as physical activity and cooking/baking (requires long hours of standing). I honestly could not tell you entirely what’s kept me from a Major Depressive Episode except that I’m genetically resilient? Not 100% sure but I want to share some strategies to help yourself or a loved one through it:

  • SEE MEDICAL HELP. I know all doctors aren't that great, but you don’t have a choice. They hold all the power to access help and specialists. See a doctor, explain your story and advocate for yourself. Don't take no for an answer! Trust your body and your gut, you know your body and your pain more than the physician does. So don’t let yourself be intimidated.

  • THERAPY. Seeking psychological counselling and psychotherapy will be a must. You will learn to develop skills and strategies to cope with the pain long term. There will be ups and downs but having space to also talk about your experiences will be therapeutic.

  • STRESS-REDUCTION TECHNIQUES. Learning mindfulness practices, yoga, and meditation are great ways to reduce mental and emotional stress. Journaling about your thoughts, learning coping mechanisms and other types of strategies can help.

  • PAIN TREATMENT. Finding pain specialists that actually help you investigate and treat the pain. Treatments vary depending on the type of pain. It could be surgery, antidepressants, medications, injections, and more. You want to be referred to an institute where pain is the specialty.

Chronic pain is a real disease, affecting real people. Don’t forget to check-in on your loved ones and remind them that they are not crazy and that they are not losing their minds.

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