Belonging.
My CFS Story.
By, Allison
“…listening to my body and doing what’s best for my CFS and listening to my heart and doing things that fill my soul…”
Until I turned 14, I lived my life like any normal kid. I played sports and was active, I went to school full time, and I didn’t think twice about my health. All of that changed at the start of freshman year of high school.
I came home from sleepaway camp that summer with Mycoplasma Pneumonia, but recovered from the infection just before school started. However, I didn’t know that the body takes about six weeks to fully recover from pneumonia, so I started high school like everyone else. Unfortunately, three weeks into the start of the school year, I came down with strep throat. To make matters worse, the strep started to infiltrate my bloodstream before I could start on antibiotics, and the two back-to-back serious infections caused permanent damage.
There wasn’t one specific day when I woke up and realized that everything had changed, but over the next few weeks I realized that I wasn’t recovering from the strep the way I had before. I was way more exhausted than usual—no matter how much I slept—I started feeling dizzy and lightheaded when I stood up, my energy throughout the day was much lower, and I started having brain fog and trouble concentrating. My doctor was mystified. I was a competitive squash player, a straight A student who had just hiked up Mt. Washington, a voracious reader who stayed up until 1AM reading under the covers with a flashlight. All of the sudden I became someone else.
I somehow managed to make it through the school year and was well enough to return to sleepaway camp that summer. It was my last summer of camp and I fought hard to be able to return. I didn’t have clearance to participate in the most rigorous activities but was able to participate in most. While it was emotionally the right decision at the time, physically it was not. Sleeping in a communal cabin, following a strict schedule, and walking miles each day slowly weakened me until I got so sick my parents had to pick me up three weeks early. I had gone to the same camp for the past six summers and camp was my life – having to leave early was devastating.
I returned to school that fall sicker than I’d been the previous year. The fatigue was more crushing, and I had debilitating stomach aches, headaches, and brain fog to contend with. My parents took me to specialists up and down the tri-state area, but no one was able to give me a correct diagnosis. Some told me it was all in my head, some told me it was depression, and some made up disease names out of my symptoms.
Until April of my sophomore year, I’d been struggling but able to get through a school day. All of that changed one spring day. The current doctor I’d been seeing had prescribed me a cocktail of stimulants to keep me awake during the day and then sleeping pills at night so I could get to sleep. I’d been taking this combination for months and one day my body had enough – it stopped responding to the medications and I had the biggest flare up of symptoms I’d ever experienced. I could barely get out of bed for a week, let alone leave the house. After that, everything changed.
I attended high school part time for the remainder of the year, only attending 2-3 classes a day and spending the rest of my time recovering from exerting myself throughout the day. By the fall, I was able to attend for the half the day, and the rest of my courses were homeschooled. Being so sick had a detrimental impact on my mental health. I couldn’t participate in social activities the way my peers could and I felt like I was being left behind. Additionally, though I was so sick, all of my symptoms were invisible and therefore, very few knew how much I was struggling.
It was around this time that I found the doctor who would change my life. I met him in 2010 and he diagnosed me with Chronic Fatigue Syndrome (CFS), Postural Orthostatic Tachycardia Syndrome (POTS), and joint hypermobility. Finally having a name for my ailments was life changing. By knowing what was wrong, I could try to find treatments and new research. Even just being able to say to someone “this is what I have” did wonders for my mental state.
I spent my junior year working hard to slowly add more in person classes to my schedule. By the end of the year I was up to six classes a day in school and was able to see friends in certain social situations, like watching a movie together on a weekend. And by senior year I had recovered enough functionality to attend school full-time, with the exception of gym class. I had worked my way up from not even being able to walk around the block to being able to walk a mile after school. My doctor and I tried a number of different medications, some of which worked, to help reduce my headaches, increase my concentration, and aid my insomnia.
College was another barrier, however. One of my biggest motivations in attending high school full-time during my senior year was that my guidance counselor had threatened me with withholding her recommendation letter if I wasn’t able to attend full-time. She reasoned that if I wasn’t well enough to attend a full day of high school, then I wouldn’t be well enough to go to college. Luckily, I had grown close to the principal during my time in school and she wrote me a glowing letter of recommendation, one that did not have any strings attached.
My anxiety around college was a separate animal. I feared not being able to handle it and getting as sick as I’d gotten my sophomore year of high school. I also feared being a social pariah because of my illnesses, not making friends, and not being able to keep up in my classes. In spite of my anxiety, I still had to apply as though I was any other high school student. In my college search, I not only had to find schools where I liked the course offerings and extra curriculars, but also places where I thought I could manage my health. The campus had to be small enough that I could navigate it without exhausting myself, it had to be located near a major medical center and easily accessible in case of an emergency, there had to be ample resources for students with disabilities, and I had to be able to live alone as a freshman. Fortunately, I found a few schools who fit my criteria and even better, I was accepted at my top choice school, Wesleyan University.
College was completely different from high school in the best way. I could set my own schedule and I always had time to nap during the day. I could go to bed when I wanted and professors were willing to work with me if I had to skip class due to my CFS. But best of all, other people didn’t seem to care that I carried a number of chronic health conditions in my backpack. They didn’t judge me for going to bed early or sleeping in. I felt like I finally belonged.
There is no cure for CFS so it’s not like I just stopped experiencing symptoms one day. Throughout college and then while working, I’ve had to vigilantly monitor my symptoms and try my best not to overexert myself. I still have to nap every day and deal with brain fog, stomach issues, joint pain, insomnia, dizziness, and more. There’s a fine line between listening to my body and doing what’s best for my CFS and listening to my heart and doing things that fill my soul.
I’ve been sick for over 14 years now and while it’s gotten easier to deal with and find that balance, I still have times when my symptoms flare up and I’ll spend days in bed recovering. I’ve had to adjust my life to my illness but I’m fortunate I’ve been able to function at such a high level. I’m now getting my MBA at University of Michigan and navigating grad school has been a new challenge, but I am incredibly lucky to have such a strong support system behind me. While I don’t know what the future holds in terms of my CFS, I’ve overcome so much already, so I know that I can handle whatever life throws my way.
Thank you to our primary sponsor, Vitassium by Salt Stick.
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