Living with Chronic Pain

These are my experiences with chronic pain, and this is what I have learned and experienced over the last four years.

Pain is debilitating; it takes over your entire life and can destroy your sense of self and well-being.

I have struggled to find others who share the same experiences and understand the effects of chronic pain. This has been a journey for me since I was 12 years old to make sense of my pain and learn through the trauma of living with it 24/7, which I still haven’t mastered yet. I have felt so isolated with my own pain, and I have found comfort and strength using that in my current academic work and activism. In the work that I do, I center it around empowerment and conceptualizing how chronic pain shapes one’s identity and sense of well-being. My hope with sharing my experiences is that someone can relate and feel a sense of relief that they know they aren’t alone. I find solidarity in reading other’s experiences with injustice, struggle, pain, etc. and sharing my own story may help at least one person.

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My pain does not have a direct cause or accident that created it, which has been exhausting to deal with and figure out what interventions work, and which ones do not. It started when I was 12 years old. One day I developed searing pain in my low back, and my parents took me to physiotherapy. I do not remember much from this time; I was dealing with puberty, self-confidence (which was at an all-time low), mental health issues, and now pain. I remember wearing a back brace because I could not move my back without stabbing pain, and I would go to physiotherapy often. Luckily, through physiotherapy and constant stretching/strengthening, my pain went away within a year. I thought my worries were over, and I could live a healthy, happy life.

When I was 18, I worked two full-time jobs, which required me to work on my feet. Some days I would work 16-hour days, even working over 15 days in a row without a day off. I needed to save money for school, and I didn’t want to worry about being in debt, so I worked until I couldn’t stand anymore. Several months after working both jobs, I was out to lunch with a friend. We had eaten our food and were getting up to leave when I felt a sudden stabbing pain in my lower back. I could not bend over, could not move, and I limped back to the car. That pain never went away. I tried everything in the book to make it go away, I iced my back, put heat on it, stretched, took pain meds, but nothing worked. So, I continued to go to work with this pain. I remember in the morning before work, my mom would have to tie my shoes for me because I couldn’t bend over enough to do it myself. I lacked a lot of independence and mobility but I still went to work because I had to, I had obligations, and I felt like I didn’t have any other options, so Advil and Motrin were my best friends.

Over time, the pain got worse and worse. Months after it started, I got into two minor car accidents, which created a massive flare-up in my spine. If I stood for longer than 15 minutes, the pain would become so excruciating to the point where I thought I would throw up or pass out. I cannot even describe this pain; it is like getting hit by a bus, breaking your spine, then getting stabbed in the spine 20 times, and after all that you have to go work an 8-hour shift. Throughout this time, I had many doctors’ appointments. I was getting x-rays and MRIs, seeing specialists, going to physiotherapy, going to massage therapy, spending countless money on pain pills, cooling gels, CBD oils, rubs, and other interventions, yet nothing would work. I eventually had to quit both my jobs because I couldn’t stand up anymore. I stayed in bed all day, every day, my mental health was horrible, and I felt like a burden.

The MRI I had on my low back showed disc protrusions in my spine. I was only 18 though, so the doctors said that physiotherapy should help. I continued to go to physio, yet the pain stayed. In the Fall of 2017, I started university. This forced me to get up and out of the house, and it was difficult at first to deal with the pain, but it slowly came down to a manageable level. Through short bursts of walking and strengthening, the pain was no longer excruciating; however, it was a constant pain in my low back, but I could live with it. I got one of my jobs back and continued in school. Over the next couple of years, I learned ways to manage my pain, yet it would never go away or get better. In 2019 I had another MRI done on my low back, and it showed an even larger disc protrusion. I made the hard decision to get surgery to have it fixed, and in May 2019, when I was 20, I had a discectomy and spinal fusion. I was in the hospital for four days, and when I got out, I was given no recovery plan, no physiotherapy, I had no idea what to do. I tried to walk every day to stay active. However, the pain got so much worse.

Ever since surgery I have not been the same. I developed neck pain that I never had before, and essentially my entire spine is now full of pain. I had a follow-up with my surgeon and told him about the new pain, but he did not seem concerned. Many doctors and specialists I have seen about this seem to downplay the severity of it and also seem to blame it on my weight (that is a whole story for another time though). I had another MRI done several months after surgery on my neck, and they found a lot of disc bulges, which are smaller versions of disc protrusions, that can only be remedied through physiotherapy. Now, I was onto my fourth physiotherapist within the last four years, a couple just didn’t work out for me personally, so I continued to seek out other physiotherapists over the years. They tried many different things, we even tried acupuncture, but nothing worked. At a certain point of having pain, you get to the point where you don’t care anymore. I am so used to the pain that it is just a part of me now, and I have adopted ways to manage it. I’ve given up on completely getting rid of it because I don’t think that is a possibility for me. I have learned to accept my pain, work with my pain, and continue to live life.

Then Covid-19 hit. There was no more physiotherapy or massage therapy for months. I was confined to my home, I still am. It is currently the final year of my undergrad degree through zoom learning, and this year has been hell. Not to mention I have struggled with my mental health issues since I was 12, which has proliferated since having chronic pain, then got even worse during the pandemic. Plus during the middle of the pandemic I had to put my cat down, who was my everything and my best friend, so 2020 was not my year. Being at home 24/7 while having pain 24/7 is not a good match. My pain has been out of this world in 2020 and now into 2021. While being a full-time student, I also work two jobs plus extracurricular activities. To manage my pain, I stretch numerous times a day, I use pain killers, I use cannabis; however, I often push my pain aside in order to get my schoolwork and other work done. Some days I cannot even get out of bed because my energy is so low, and literally feel like I ran a marathon and got hit by a car. I love to be active and feel healthy, but even walking on the treadmill for 30 minutes a day results in flare-ups. I used to be able to run and jump and do any kind of activity without thinking about it. Currently, I am almost done with the school year, and I have appointments lined up to get trigger points injections in my back and neck. Trigger point injections are when an anesthesiologist sticks a needle with local anesthetic into points in my back that hurt the most, in hopes that it will work to disperse the pain in the muscle. If that does not work, we will try cortisone (a steroid) injections into my spine. The thought of these two procedures terrifies me, but at this point, I will literally try anything to manage it.

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There are several parts of dealing with chronic pain and things I have learned that I want to highlight.

Pain impacts every part of life

No part of my life is untouched by my pain. I have learned that my pain is a part of me now, not in a bad way, but in a way that I need to be mindful of how my body feels and listen to my body. I cannot do the same things that I used to love doing, I cannot work shifts longer than 5-6 hours because my pain flares up too much, I cannot sit for longer than a few hours at once, I cannot run, I cannot walk for long periods, I have had to adapt in many ways. Pain drastically affects mental health as well. When chronic pain or chronic conditions come around so suddenly, it is like a major disruption in one’s life. You basically have to relearn what your life means again, I cannot do the same things I used to, and I have to accept that. Still, sometimes it is so paralyzing and leads you into a negative headspace. I cannot sugarcoat anything and say that I have overcome this because it still drastically affects my depression, and I am only beginning to learn how to deal with that. I have many obstacles in my daily life that I must overcome, and sometimes I persevere, but sometimes I give up for that day. It is important to learn to feel no shame or guilt in doing so, and it has been hard to learn. It is okay to have bad days, and it is okay to take time for yourself, to listen to your body. My body is the one who knows me the best, and I don’t give her enough credit.

Pain comes with trauma

It took me a while to realize how traumatic it was living with chronic pain. For a constant four years, I have been in pain. I have feelings of shame, guilt, sadness, anxiety, depression, etc. I remember working at my jobs when I was 18, shortly after the pain had started, and I would cry all the time at work from the pain. One of my coworkers said, “why don’t you do something and actually go get it fixed.” I felt saddened, and I felt like a burden to my workplace, which was one of the main reasons for quitting. I don’t think a lot of people understand how debilitating pain is and how much you can do to fix it, and nothing works. At that time, I was doing everything in my power to get help and get it fixed. I spent so much money, saw so many doctors, and I cannot just “get it fixed.” I did not feel like myself, and I still do not. Whenever I have a flare-up or pain outside of my normal pain level, I get extremely anxious and panic. Pain has caused my depression to flare up as well; I feel isolated, alone, tired, overwhelmed and powerless.

The most traumatic thing was the surgery. Before surgery, I was on a health journey. I had lost 30 pounds and was the healthiest, mentally and physically, I ever had been. When choosing to have surgery, I thought it would help me get over the pain and grow on a new journey in life. After surgery, I am in even more pain, I don’t want to do anything, I cry all the time, I gained all the weight back, plus more. I feel lost. Whenever I think about my pain, I cry; I think, why me, why now. There is always a fear of what is next, what does the future hold, how will my pain be in a few years, let alone 20 years. Going through years of medical interventions and surgery to just have the pain worsen is draining and weakening. But I try to focus on the present, of managing my present pain, trying my best to remain positive. It has been a process to unlearn and un-think these things about myself and my body, and I have barely scratched the surface of forgiving and loving my body. The last four years have brought about a lot of suffering, but also good things, finishing my degree, finding the love of my life, travelling, seeing my friends, going onto my master’s degree, and getting so many amazing opportunities. I don’t regret having the surgery, I think it was something I needed to do, and it has brought me closer to myself and understanding myself, but I can’t help but think what my pain would be like if I never got it.

Pain changes your sense of self

I don’t remember myself before having pain. I don’t remember a life without pain. Pain interrupts life, it affects how you view life, yourself, others. In the beginning, I felt alien to my body. I was not used to pain. Having an invisible condition at such a young age means that people do not take it seriously, and it feels like I am trapped. Once I had surgery, I felt even less like myself. It caused even more pain throughout my whole spine, and I couldn’t come to terms with what had happened. It took me over a year to understand that the surgery didn’t work, that I am a different person now, and that I have a lot more pain ahead of me. I am no longer the same person. Pain is draining, paralyzing, tiring, exhausting, etc., but because of this, I now think I have a stronger connection to myself. I have been the one by my side this whole time, I have been the one who calms myself down, to drag myself to another appointment to hear more bad news, to listen to my body, I have been the one who feels the pain every day, and yet I still give myself a hard time. The last four years have felt like an eternity, but I’ve learned a lot about myself. While I often have horrible feelings about myself and my body, I remind myself that I am resilient, strong, almighty, and I know I can do anything.

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Toward a future of empowerment…

Writing about my pain is a source of therapy for me. I should probably actually see a therapist again about my pain and mental health, but I tend to put it off. This past year has been challenging for me, but I need to remember to forgive myself and listen to my health. Using my experiences in my academics has been empowering. I am a Sociology and Women’s Studies major, and this year, I began taking classes related to health, and I am currently working on my undergraduate thesis that looks at the social determinants of chronic pain. In my women’s studies classes, I have been more open to including my experiences to inform my work and it feels so empowering. I have also been accepted to grad school, and in my master’s, I wish to continue studying chronic pain. I want to work alongside other women to understand their experiences and how chronic pain has shaped their sense of self. The social impacts of and the major effects of chronic pain and chronic conditions on an individual are very under-researched and under acknowledged in society. In the future, I hope to continue my advocacy and activism and find sources of empowerment for those with chronic pain. I find happiness and fulfillment in writing and researching things related to my experiences and hopefully helping and empowering others along the way.

When living with chronic pain, it is important to remember who you are, how strong you are, how much you have gone through and that you are not your pain, but your pain is a part of you. It has helped shape you into the person you are today, which is not a negative thing. One of the major things that have helped me is having a support system. My family, partner, friends, and fur babies have always been there for me, supporting me with anything and everything, and I couldn’t ask for anything more. It is a journey to learn how to manage your pain and care for yourself, but you will get there. These are things that I still am working towards, I need to listen to my body more, I need to put myself first. I need to continually remind myself who I am, what I love doing, who I love, what makes me laugh and smile, and not let the pain destroy me because I am not my pain.