Basic Stuff

• Name: Stéphanie
• Country: Canada
• State: Saskatchewan
• City: Saskatoon
• Gender: Female
• Age: 53
• Education: Ph.D Degree
• Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
• Year Illness Began: 2015

Functioning Interrupted

Most Impactful Loss

The ability to concentrate for long periods, to think through complicated problems, to learn effortlessly and to read for hours, both for work and pleasure, are my greatest losses. I have easily adapted to much reduced physical word, but I mourn my mind.

My Story

My story is simple. My CFS/ME started after my best friend was murdered by her ex-boyfriend and I suddenly couldn't sleep at all. I have a wonderful, supportive partner who has taken on all of the responsibility for our household and we rearranged our bedroom and bathroom so that I can do all of my self care sitting down, allowing me to focus my limited energy on continuing to do research, although in a much reduced capacity. This has given me a continued sense of purpose which, along with the support of my fabulous research team and some wonderful friends, has allowed me to maintain good mental health. I have found a treatment regimen that keeps me relatively stable if I am strict about activity pacing, and I am open to trying new treatments as they become available. However, I want those treatments to come with strong research evidence. I have been very fortunate in my healthcare providers. I have come across very few who have not believed me and only one of them was a gate keeper. I am also very grateful to live somewhere with universal government health insurance, but even with it and supplementary insurance through my university, I pay between $600 and $1000 a month for medical services that are not covered.
I have made the decision to expend as little physical energy as possible, to give the greatest possible share of my energy "spoons" to mental energy. I shower, dress, brush my teeth and take my pills sitting down. I shower 2 to 3 times a week, instead of daily. I changed my hairstyle to something even easier to look after. I plan my days, including how often I use the bathroom (we only have 1), to climb the stairs in my house no more than 3 times a day. I do no housework at all. I sit reclined most of the time, even for meals; my partner has built me a reclined computer chair from a deck lounger with a futon for padding, and custom armrests and keyboard tray. Still, I have to work part-time. I need a 2 hour rest in the middle of the day and I have to rest on Wednesdays. I have daily pain in my face, neck, spine and hips; I have headaches more than half the time. I get anxious, lightheaded and panicked from standing for more than a minute or so. Any physical exertion gives me muscle pain immediately and for the next week. Mental exertion and strong negative emotions also give me muscle pain for days afterward. I am sensitive to bright lights and sound. I am completely unable to multitask: last week I was at an appointment and I could not fill out a list of my allergies because another couple in the waiting room was talking and I could not tune out their voices. In addition to increased physical discomfort, exertion, high emotions and fatigue give me increased mental fogginess, short term memory and word finding difficulties, difficulty with logical thinking, decision making and concentration, along with making me generally irritable. I am usually severely impaired for only a day or two, but it can takes weeks to get back to baseline.
I would be able to work more, still part time, if my employer were willing to provide some simple accommodations, including allowing me to continue to work from home some of the time by attending meetings virtually, providing me with a few hours a week of administrative support and permitting me to teach online occasionally, but they are resisting. I have filed a grievance, but it is very stressful and taxes my energy, leaving me tired and frustrated. I have the support of my union, for which I am most grateful. I do not understand why the University is choosing to fight me, when the accommodations are neither expensive, nor complicated and that have been demonstrated to be feasible, while they are wasting the expertise of a highly trained person. It makes me even more baffled because I work under the broad umbrella of medicine, where, one would think, there would be an ethos of helping and supporting people. I also think that it sets a very bad example for students to just cast aside faculty with disabilities. Again, I am very fortunate to have as many people in my corner as I do, and I remain encouraged that the law (and the right thing to do) is on my side.
So while the exterior world has shrunk to mostly the walls of my home, my interior world has grown. I have come to know myself better. I have strengthened relationships with friends who live far away through letters, which I write slowly adding a sentence or a paragraph a day, and with friends closer to home over tea. I am kinder and more patient. Except on days when I feel really awful and am pitying myself, it is easier to assume that others also have good reasons for what they have done (or not done) and to approach situations empathically rather than judgementally. I am also angrier at injustices: those that have afflicted me, those that I research and those that have impacted my friends and family. But instead of storming the barricades, I'm ready to play the quiet long game, with empathy, patience and tenacity, because I don't have another choice.