4

There's No Conception of the Mental Side of Physical Problems

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A lot of us still imagine the human body as this dualistic wonderland where our physical problems don't affect our brain or thinking. So while healthy people might be sympathetic to the physical limitations of the ill, they imagine that apart from that, it's not that different from being healthy. And hey, sometimes that's true. But often it's not. In my case, the illness that was fucking with my body was fucking with my mind as well, because some illnesses are just slutty that way.

Here's a window into what life is like when your brain is being battered by a chronic illness: You come home from a 12-hour day at work and stumble in the door only to find that half of your apartment is flooded because the toilet is blocked up. With bees. After disposing of the last of the angry poop-scented insects, you finally collapse on the couch, only for someone to hand you a 10-page form and tell you to fill out your entire life history, and then organize 10 separate doctor's appointments with receptionists who have all lost your files. And all the while, you know for an absolute fact that you'll have to fill them out again within the next couple of weeks for the same reason.

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"Why do they need to know my dog's name?"

That's what it's like to deal with the medical system when you're one of the people that the system is designed for. You have to organize appointments, get insurance permission, deal with referrals, and keep track of medical records, all while your brain and body are running like Internet Explorer on a seven-year-old machine you just spilled Diet Coke on. You need to organize transportation to doctor's offices if you're too sick to drive. And after all that, you have to conjure the mental energy to speak intelligently to the doctor and remember all their instructions so you don't burst into flames by taking the wrong medication at the wrong time.

3

If Medicine Doesn't Understand Your Condition, They'll Assume You're Just Crazy

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Did you know that hypothyroidism used to be caused by fits of hysteria? And morning sickness was caused not by hormones, but by a woman trying to unconsciously reject her baby by vomiting it up? When it comes to unexplained symptoms, doctors have never been very good at saying, "Wow, I really don't know what is causing this problem. Perhaps we'll know in the future, when we have flying cars and such." Instead, patients are often told that they're hypochondriacs, mentally ill, or just plain faking it to get attention. This is still happening today, with little-understood conditions like fibromyalgia and chronic fatigue. And don't think you can avoid this by developing a relatively well-known illness: You can have a medical condition that's been in the scientific literature for decades, but if your doctors were asleep in class that day, they'll be happy to call you a hypochondriac, too. Several doctors did it to me.

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They were right. Faking illness was the only way I could indulge my crippling blood-pressure-cuff fetish.

2

People Will Assume That Your Sickness Is Your Fault

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No matter what kind of long-term illness you have, you will eventually run into this person. The one who remains convinced that, despite what doctors say, you are sick because you just haven't tried enough. "But have you tried positive thinking?" they ask you. "What about switching to an all-raw lembas diet?" "Why don't you try having tantric sex with organic dolphins?"

Yes, sometimes these people are just trying to help, and obviously there's nothing wrong with trying to live healthily. But as your illness progresses and nothing works and these people still won't shut the hell up, you start to notice something darker behind this attitude. There's this lurking assumption that health and illness are always within our control, and that if a person is sick, it must somehow be their fault. The attitude is a manifestation of a mental bias called the Just World Hypothesis (I assume "Ignorant Bullshit" was taken), the belief that the world is fair and that bad things do not happen to good people. So sick people are never sick because they have been randomly bitch-slapped by bad luck -- it's because they're not thinking positively, they're having too much sex (or not enough), they ate food with "chemicals" in it instead of consuming pure energy, and so on.

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"She must have done something. Probably stole something from a child."

1

You'll Probably Be Invisible

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Television and movies generally feature two categories of sick people. First, there's the character who gets sick and is then cured completely when it's time for the plot to move on. Second, the plucky, cheerful disabled or dying character who's there to make the healthy characters feel better about their own lives. And then during ad breaks there's the pharmaceutical ads, which are always populated by people like this:

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Because nothing says "multiple sclerosis" like a fun run.

Real illness is rarely like that. Sometimes even successful treatment doesn't cure you; it just makes life go from "Star Wars Episode I-level awful" to "Star Wars Episode III-level bearable." Sometimes illness doesn't teach you anything, or make you a better person. But because so many of us rely on the quick and/or life-affirming versions of illness we've seen on television and in movies, we tend to discourage real-life experiences when they don't match up. Cancer sufferers discover that people don't want to listen when they express understandable feelings of anger or depression, because everyone expects people with cancer to be strong and courageous so that we can repeat their uplifting stories in email forwards. People who are sick for years might find that friends who were understanding at first gradually start to drift away, as if they're thinking, "Didn't you have surgery already once? Isn't that story arc over yet? For God's sake why aren't you doing a fun run?"

Things aren't much better in the nonfiction parts of the media, either. Remember that Just World Hypothesis? The comforts of its delusional embrace mean that stories about sick people who got what they deserve are always far more popular than potentially unsettling stories about people who got sick through no fault of their own. Instead of coverage of people who are fat because of thyroid problems or PCOS or genetics, we have reality shows that feature overweight people eating cheeseballs off the floor. News reports skip over the hundreds of people who got dick cancer through no fault of their own and focus on that one guy who drilled a hole in a nuclear reactor and had sex with it.

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Bucket list complete.

No, there's probably not a lot you can do to fix the system -- that has to come from the people who run it -- but hopefully I've at least helped prepare you for it. Trust me, expecting the clusterfuck will save you even more medical bills on fist repairs.

C. Coville is now cured of all non-cannibalism-related brain problems, and has a Twitter here and a Tumblr here.

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