An Everyday Champion: Finding the Joie de Vie with a Chronic Illness
As the summer comes to an end, I feel compelled to reflect on the year that has passed. Yes, I am a chronic student and still consider the new year to begin in September when the bell rings. I also suffer from Crohn’s disease, an often debilitating autoimmune disease that creates inflammation in the digestive tract. A disease that seems to hit me the hardest when the summer sun disappears, the leaves start to change, and the assignments begin to pile up.
In September of last year, the health and energy I had benefitted from throughout the summer quickly disappeared. I began losing weight because my body could not tolerate eating more than chicken soup and applesauce. I had to run to the bathroom upwards of seven times a day and in between those frequent trips, would suffer from serious stomach cramping, often having to buckle over in pain regardless of what class, store, or other public place I found myself in. It was at this time I had just started settling in to life in Ottawa after a seven year absence, my first year of a Master’s in Counselling, and a new job. A lot of change was happening, all of which quite negatively affected and in turn was affected by my flaring disease.
This blog post isn’t about the pain, the unpredictability, embarrassment or stigma that is so often brought about by this illness. For more insight into the horrible workings of Crohn’s disease, I highly recommend you read Debbi Wynn’s very poignant story. Instead, I write for you today to talk about how I got through one of my difficult periods by negotiating ways to balance my values, obligations, and priorities along with my health.
For two years prior to last summer, I had enjoyed relatively good health and a reprieve from medications by strictly adhering to a food regimen that forbids all processed grains and sugars in exchange for a diet rich fresh vegetables and fruits, and meats. While I was by no means cured, I did enjoy great health and energy while adhering to this particular diet. The problem was that it was only effective if you followed the regime with, as its creator stressed, “a fanatical vigilance”. Consequently any cheating on this diet brought about feelings of guilt and failure, both of which I’d soon feel in abundance. My incredible summer of working at music festivals, camping, and the temptations of barbecue and beer didn’t afford me the will power necessary to eat only “legal” foods. My fall turned into a nightmare.
It was then I had to really figure out how I was going to balance my life and regain some semblance of wellbeing. I hated the idea of having to go back on medications because of the often terrifying long and short-term side effects. On the other hand, I also knew that diet alone was not working for me as it once had. I felt I had little choice and went on a medication that was potent but worked fast. Shortly after getting pumped full of drugs, I felt better and started eating a more balanced diet for the first time in years. I could go out to dinner and not worry about whether or not my meal was contaminated by “illegal foods”. I was more relaxed and could enjoy my food instead of being fearful of it. Although I did benefit from some physical relief with meds, I was nowhere near problem free. Pleading with unaccommodating health insurance and government agencies to cover the $1000/month pharma bill brings about a whole new set of stressors and sickness.
There is no cure for Crohn’s disease and medications are by no means a silver bullet. Living with Crohn’s means having to constantly balance your health with your social life, career, romance, and whatever else you value. I value my health but I have learned that health is more than one’s physical well-being, it’s a life that affords you not only freedom from the bathroom but freedom to live and play without pain or guilt. I use medication as my backup but still try to eat healthy, exercise, and rest. I am also learning to say ‘No’ to added responsibility that risks causing me undue stress, something that many people both with and without illness need to work on. I sometimes say yes to chocolate cake and that’s ok too.
I recognize that I am still not nor will I ever be without some sort of pain or health related concern but at least for the time being I feel like I have struck a balance that enables me some of that beautiful joie de vie. Looking back on the last year, I am aware of my ability to thrive and appreciate life despite living with a pretty shitty disease. I have had to make compromises and roll with the painful punches that chronic illness can throw but I got through it and will continue to do so not because I’m special but because it’s what you do. So my School Year Resolution this time around will be a promise to myself to keep on doing the best I can with resolve and conviction as we embark on the turning of the season.
I met Jess during my Master’s at Queen’s. She too, was completing her Master’s at the time. I knew Jess had Crohn’s disease from a blog she wrote while at school about the illness, oh, and her thesis title may have helped, Everyone Poops but No One Wants to Talk About It: The Lived Experiences of Young People With Inflammatory Bowel Disease. But I didn’t really know much about Crohn’s disease. I knew it was a chronic condition, I knew it required some dietary changes and could potentially lead to surgery, but I didn’t know the full story. Thanks to Jess, I do now.
In my conversations with Jess via email, she stated that she does not see herself as an ‘Everyday Champion’. She wrote, “We are resilient because we have to be, not because we’re special or extraordinary”. She went on to write that being told she’s ‘brave’ or ‘strong’ makes her uncomfortable – that it can make someone feel like an ‘other’, an outsider of sorts. Her words caught me off guard, but also inspired much thought. While I wasn’t intending to make her feel like an ‘other’, I can understand how someone with a chronic illness who is constantly told how ‘strong’, ‘resilient’ and ‘amazing’ could feel that way. Yet, at the same time, I feel its important for those without a chronic illness to recognize the challenges that those with a chronic illness must face everyday. To be more understanding and compassionate. To give someone more time and the benefit of the doubt. And to provide support when asked.
While Jess may not think so, I think she exemplifies an everyday champion. She has faced many challenges and will face more down the road. She spent two years researching and writing about Crohn’s to help others afflicted with the illness to find peace, balance, and some semblance of normalcy in their lives. Jess has worked hard to strike a balance between her social and physical health, understanding the necessity of that balance. And she has done all this with a humility that is quite refreshing. To me, Jess is, without a doubt, an everyday champion.
Thank you, Jess, for sharing your story.