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Facing Skepticism From Others That My Illness Isn't 'Real'

Those of us with chronic illness are often forced to wage two wars at once. Not only must we cope with the immeasurable impact of our illness, but many of us also face the burden of skepticism from peers, the medical community, friends, and even family. If you’re anything like me, you’ve spent an unfortunate number of hours banging your head against a wall metaphorically (most of the time) trying to convince others that the nightmare you are going through is very, very, real.

My illness is invisible. It is called myalgic encephalomyelitis (ME), which is a chronic neuro-immune disease that causes a wide host of unpleasant symptoms, with extreme exhaustion that does not improve with rest being the main hallmark.

It has taken me two years to receive a diagnosis, and even so, this disease is still not widely respected by the medical community. Although times are changing with the emergence of new research that shows us how patients with ME have metabolic differences compared to healthy controls, this disease is often thought to be psychiatric in nature, or a “fake” disease that gives patients an excuse to be lazy.

This misconception could not me more ridiculous and wrong. There is no on and off switch. There is no “snap out of it” or “try harder.”

In an attempt to have the normal 20-something experience, I downloaded Tinder. Man, I wish I could copy and paste some screenshots of the conversations I have had as they perfectly sum up how alien I feel in comparison to others my age.

As I was scrolling through the profile pictures, these people were more often than not rock climbing, river rafting, or posing with some exotic animal on a safari trip. I was exhausted just from swiping right or left. Although I don’t like to talk about my illness (especially to those I am just getting to know), oftentimes it is hard to avoid it because it has become the 50-ton elephant on my back for three years. It has prevented me from going to school or having a job, let alone posing to take a selfie with a tiger in the jungle.

When these people on Tinder would ask me my backstory, or what I’m up to currently, I sometimes default to my go-to line: “I just took some time off of school to deal with some things that have come up.” If the conversation continues, I often am pressed to be less evasive. I was talking to one guy on Tinder, and explained a little about being struck down with an illness. His response was, “Oh man that sucks, if that happened to me, I would just work out, eat tons of protein bars, and think as positive as possible. Positivity could cure anything.”(Damn dude, you should write a book. That’s some ground breaking stuff.)

Although I am sure these comments only have good intentions, they tend to only extenuate my feelings of isolation and invalidation. What I read in between the lines, is “You’re not trying hard enough to overcome this.” In turn, I begin to second-guess myself. Am I not giving this my best shot? Am I weak? Perhaps I am not being positive enough after all, or not pushing myself hard enough. As soon as I push, I am violently jerked back into my reality. This is not a problem that positive thinking and granola bars can cure on their own. Every physical and mental activity is that much harder, as it feels as though I just downed a bottle of Nyquil, only got eight minutes of sleep, all while having the worst flu imaginable.

Lately I have learned to expect the slew of “try harder” or “you just need to have more fun” comments for my peers, and I no longer think too much into it. Unless you are going through it yourself, it almost impossible to understand the complexities of a chronic invisible illness striking you down at age 20. However, I do not expect this treatment from my doctors.

A few weeks ago, I was referred to a neurologist. After I explained everything to him, I was shocked at his response. My doctor was no better than some of the guys I was speaking to on Tinder.

In response to my years of struggling, he told me I was an “attractive and healthy young girl” and perhaps I was just lonely. Maybe it would pick my mood up if I had a cute boy to take my mind off things. I was appalled.

Not only is this treatment sexist, but it is belittling. He had only just met me. He had no right to minimize my years of suffering by telling me it could easily go away if I just swiped right on the perfect man. He had no idea how much I try to push myself beyond my limits.

Comments like this do way more harm than good. This treatment is so 1950s. This erodes the sense of trust between doctor and patient, and makes this patient feel even more ostracized and invalidated. I am secure enough to understand this is not all in my head, but another patient may begin to second guess herself. She may leave that doctors office with a sense of guilt that she is not trying hard enough, and in turn push herself dangerously beyond her physical limits.

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Thinkstock photo by Dreamerjl83