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My Struggle to Control How People See Me and My Invisible Illness

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Invisible illnesses can take so much of a person’s independence. They can berate the mind and weigh on the body day in and day out, all the while leaving your outward appearance relatively unchanged.

Strangers look at you stepping out of your car in a disabled parking spot with piercing eyes and you swear you can hear their condescending doubt echo with every step you take. Coworkers glance from the corner of their eyes as you take what might as well be your hundredth break to step away out of breath, despite your job not requiring extra physical effort. Distant family members question your choices, completely oblivious to the fact that you’ve informed them countless times what prevents you from being like the “rest” of the family. Not to mention strangers on forums online who flood your inbox with how you “should” be taking care of yourself. “Walk more, drink more water, eat healthier, etc.,” as though this is some cure-all for hundreds of conditions, regardless of the individual.


And yet, despite this prison you may find yourself feeling trapped in, there is an odd sense of control when your illness isn’t visible to others. If your illness is invisible, you get to decide what others see from you each day. You can hide the severity of your situation with lighthearted jokes and superficial banter. You can talk to a friend while smiling about the weather without them knowing it left you incapacitated in your bed the day before. And while I’m not one to necessarily lie about the extent of my situation and the hardships I face, there was a time when all I tried to do was live up to this façade I had been creating.

“Oh, sure I was in the ER last week but I’m doing so much better now. Hopefully it was just a fluke!” I found myself saying more often, unwilling to let them know my condition was getting so much worse.

It’s not like I had interest in shutting people out or I was holding onto any sort of heroic idea that I could handle all of this on my own – it just became a habit I couldn’t break. A bad habit more dangerous than all of my others in the past. I went from biting my fingernails to going out to social events so medicated I could barely walk straight but pretending I was fine.

“I feel fine! Guess I’m more of a klutz than I thought!” As my bruised body protested every dizzy fall and weak stumble into a wall because I was too stubborn to ask for the help I desperately needed.

Having recently transferred to a new university, I had a unique opportunity to present myself in a way that perhaps wasn’t defined as the “sick kid” like before. However, my desire to be seen as something more than my illness proved to be more harmful than anything. I not only refused to let people see the darkness of my chronic pain but I also pushed away people who were genuinely trying to be my friend in fear that my condition would scare them away.

I isolated myself. All the while convincing myself that this was the only way to handle my new “persona.” I started missing more and more classes and spent most of my days alone in my dorm room barely able to get out of bed, let alone function enough to take care of myself. My condition was continually getting worse and I continued to push myself further into an isolated hell away from people who were genuinely interested in helping me.

This vicious circle continued for the entire school year and I had practically reprogrammed my mind into thinking that how I was treating myself was not only normal, but that I was also in control of how other people saw me.

It was all fake, of course. People knew I was sick and noticed I was never in class. On rare occasions when I was able to make it in, I was met with a loud chorus of surprise. My pessimistic self was sure they weren’t being genuine and were instead teasing my inability to be a good student.

This is what my chronic pain forced me to become. I couldn’t see the good in people anymore. I couldn’t see the good in myself. While trying not to let my chronic pain define me, I ended up consumed in its side effects. My anxiety and depression were through the roof, my pain was debilitating my daily functioning – and perhaps the worst part of it all is I was alone.

It wasn’t until near the end of the school year that I couldn’t control people seeing me sick anymore. I had to be ambulanced out of class because, once again, I was too stubborn and hated myself too much that I forced myself to walk to class. I barely remember anything that was taught in that class because I spent the whole time containing the convulsions and the need to scream from pain.

That’s when I realized how wrong I was that entire year. There I was, surrounded by a group of 30-some peers – people who were kind to me and wanted to care about me – and yet I was isolated because of this silly idea I had about my illness.

But I wasn’t alone. People I had worked with the previous semester could see I was struggling and didn’t ignore it. They didn’t decide that my pain wasn’t their problem.

They just wanted to help a friend.

Like a rubber band being snapped in my head, all of the pain and the self-doubt I had been struggling with busted through the floodgates. It was extremely humbling to realize how much people cared about me despite some silly idea I had that they wouldn’t want to be involved with it. They saw straight through my façade and played along because they could see that was what I wanted them to see.

Like I mentioned at the beginning of this post, invisible illnesses can take so much of a person’s independence. And so much of this comes from within ourselves. We may program our minds into thinking that because our condition isn’t necessarily seen by others, that we have more control over its effect on our everyday lives. But the truth is, we need to respect our invisible conditions as valid or risk letting them consume us while we think no one notices.

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Thinkstock photo via OlgaSiv.

Originally published: August 2, 2017
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