When You're in Between Good Health and Disability

If some chronic illnesses are severe enough to be comparable to cancer, then I have the equivalent of the common cold. And while this is a privilege, there is still much guilt — and much learning — to be had while living in between sickness and health.

In the fall of 2015, during my freshman year of college, I was diagnosed with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis. Some of the symptoms associated with this illness — tiredness, all-over body pain for no apparent reason, issues with focus and short-term memory — have been a daily experience since at least my junior year of high school two years before. My bassoon teacher even noted as early as when I was 14 or 15 that I might have developed “arthritis or something,” as he phrased it; my hands would sometimes painfully lock in half-made fists that took much effort in order to unstick. In my senior year of high school, I usually went to bed at 7:30 or 8 p.m. because I could not stay awake any longer, only to wake up just in time to be ready for my 6:30 a.m. school bus the next morning still as tired as before I went to sleep.

Last fall, however, began the worst flare-up of these symptoms thus far. For most of October and November, I merely existed: I went to classes and rehearsals, ate two meals per day, and otherwise stayed in bed. Once, the weight of both complete exhaustion and moderate pain on every square inch of my body had me collapse at a table in the dining hall during lunch, and an acquaintance had to help me back to my room because I could not get there myself. On another occasion during this period, a friend gave me a gentle tap on the shoulder to get my attention, and the pain of that slight touch radiated through my entire body and, for a moment, my whole world became the sensation of falling down an endless staircase head-first (that poor friend tells me he still feels bad about this incident, and now always asks before giving me hug or otherwise touching me.)

This is my life during a major flare-up, which will usually happen two to three times per year and last for several weeks. A smaller but still noticeable increase in difficulties — a small flare-up — may only last a day or two and will usually occur every two to four weeks for me. I also live with a pretty fragile immune system due to CFS, so I end up with pretty much every virus which goes around and a few extra colds and such to boot. On an average day, though, I am only mildly inconvenienced by my illness. My life is usually not too heavily restricted due to this disease. While some with CFS may even find it difficult to leave the house most of the time, I can usually make it through my day without visible incident. I experience a lot more aches and pains than a typical person, I take more breaks and sleep for more time with less of a refreshing reward, but there is no visible marker to indicate that I am unwell.

While the unrelenting wave of strangers and loved ones alike proclaiming that “you don’t look sick” is a phenomenon experienced by many with chronic illnesses, I tend to give these statements extra merit. I mean, I don’t look sick. I am 19 years old and a full-time college student studying music therapy who also works in a nursing home. I speak so little about my illness that I’m not even sure that most of my family members know about it; I usually only explain it in the midst of struggled, out-of-breath apologies as to why I can suddenly barely walk. I try not to talk about my chronic illness because I fear responses of either pity or unbelief.

I have felt guilty about my illness, both in reference to those who are also chronically ill as well as to those who are not. There are people with illnesses who, as mentioned, may be primarily bed- or wheelchair-bound. Some people cannot eat or use the restroom in a typical or simple manner, some cannot communicate effectively, and although my illness is very real, it seems silly to complain about being tired or achy or foggy. This is so small — not for all people with CFS, but for me in particular — that it almost sounds selfish to mention. Likewise, I am wary of mentioning my illness to those who are not sick because being tired might appear to be a phony excuse, not a legitimate issue. It is a strange in-between where, if we were to split society into two groups — sick and not sick — I do not know to which I would belong. Thankfully, this is not the case: we each have the opportunity to be ourselves. As my school’s composer-in-residence, Dr. Clint Needham, wrote in his piece “Advance Always,” for which I played contrabassoon in the world premiere:

“We embrace our imperfections, we embrace with courage.

We are patient with you and with ourselves.

We give the best of ourselves to the world.

We bend (not break!) the rod of strife, gently and with time.

We are who we are, and we are that, perfectly!”

I tend to advocate for those living with illnesses through my everyday behaviors, not my personal testimony. I do my best to be patient and slow to judge, for what may be a simple task for me may be a complex struggle others depending on their circumstances. Perhaps this is the greatest gift my illness has given me: tolerance. In elementary and middle school, I was the total brainiac type: straight A’s, captain of the quick recall team, hand eagerly flew up in the air each time a teacher asked a question. Especially in elementary school, I could never grasp why some of my classmates needed extra reviews or additional help because I was blessed with the ability to understand nearly every school lesson on the first go. Now, I realize that different abilities — physical and intellectual — may exist for reasons that cannot be seen, or even for no logical reason at all.

I find myself somewhere in between good health and severe disability, and I am learning to find a place for it in my life where it is not all-consuming but also not treated with shame. I am now a college sophomore who loves her school and her studies in music therapy, who works in a nursing home, who loves her friends dearly, who spends hours upon hours on YouTube… and who is just a little bit differently-abled because of a chronic illness. I am who I am, and I am that, perfectly!