The Limits of Life With Chronic Illness

“You can do anything you put your mind to!” Yes! Let me just tell my brain that I am not sick!

While pep talks are appreciated, they can be seriously short-sighted.

These are just empty platitudes people say because they want you to feel included, something many people are programmed to do. Inclusivity is a good thing in the right context, but oftentimes it’s a cop-out to avoid feeling guilty over the fact that you can’t fully participate in life as they know it. This is not to say we can’t participate in life, but it makes it difficult to navigate a world catered to “well people”.

People love to highlight the rare cases of successful people who have overcome a severe medical impairment. Chances are, they stumbled upon some inspirational video on Facebook after googling your illness, or they watched a movie about someone with an illness who is too proud to accept help from others and pioneers their way through to success with sheer willpower. So, they hold onto that little bit of unrealistic hope and compare everything you have to others. It’s frustrating to constantly be compared to people impossible success stories. They are defining you by your own illness and stereotypes around it.

There are always going to be Cinderella stories out there, but they aren’t a reality for everyone with a chronic illness. They change the ideas around what accessibility means, and it’s still a cookie cutter outline that leaves a lot of people with a chronic illness out of well-paying jobs, degrees, and success.

The regular 9-5. I quickly found out how unrealistic this was for me to do. I have a lot of absence seizures, and they are disorienting. I look normal on the outside, but I am actually incredibly sick. I couldn’t make it through six weeks of a regular job, let alone a year to qualify for FMLA. It takes more than willpower to magically stop seizures. Yet coworkers and friends kept telling me how it will get easier with time. My question was, what will I do in the meantime? I can’t keep going like this without ending up in the hospital or worrying about missing too much work, both of which happened to me. I wound up having to quit before being fired for excessive absences. So, not only did I wind up out of a job, I couldn’t get out of people telling me how they had a cold last week and just kept going. Or how Irene in the sales department has epilepsy too, but she’s here every day. I’m not Irene.

Getting a college degree. This is hard for normal people; imagine what it is like for your friend who has chronic migraines or absence seizures or chronic pain. I had a moment where I realized that if I couldn’t work a regular 9-5 job then there was no point in trying to finish a degree. After all, the standard 4-year degrees are designed to make sure you’re a good little worker. Sure, I could attend online school with help from the disability center and go at my own snail-like pace and eventually get a worthless degree in about eight years. But, I can’t work in that field, let alone any other — I’ve tried. Not to mention the mountain of debt I could never begin to pay off. My attempts at school have already left me with more debt than I can handle and, I don’t need anymore.

There are some things that will power can’t get a person through. Physical barriers, pain, and illness are different for everyone. Chronic illness is a lifetime balancing act of trying to be normal and trying not to relapse. Often times the act of being normal is damaging.

 

 

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