Why I Lie About my Chronic Illness
I learned very early on that, when you’re under 60, no one wants to hear about your health problems. Unless you have a “normal” problem like a stomach or headache, or are actively dying from a disease, therefore rendering you inspiration porn to serve a somber reminder to the able community, nobody wants to hear it.
When I was in grade school, sitting alone on a bench because I couldn’t play sports with my peers, I always got the inevitable question: What’s WRONG with you? I took that question at face value, as I often do. I explained about my asthma, my body aches due to medication, and the fact that overexerting myself could literally kill me. Nope. Not what they wanted. What they wanted isn’t limited to “kids being kids,” and is a problem I’ve noticed with all fully able people: they want the answer that will make them feel the most comfortable.
A better answer might have been: “I have a tummy ache,” or “I broke my leg.” Normal problems. Problems they could understand and even relate to. Or I suppose I could have pushed myself against doctors’ orders in order to “fit in.” Because, even according to some of my teachers, the comfort of the “normal” kids in class— their ability to exist without having to think about how this world is set up for people like them but not for me — was more important than my illness.
I know what you must be thinking. Kids are cruel, right? It must get better as we age. It doesn’t. As I grew older, my chronic invisible illnesses only worsened and evolved into mental health issues. With this, I soon discovered that I would need to tread carefully if I wanted to stay employed, or not be dropped from a class.
Have you ever worked somewhere, or gone to school with someone who was always out sick? One day it’s a migraine, the next it’s pneumonia. No more than a few weeks pass, and they’re “supposedly” in the ER for some new issue. It’s always SOMETHING with this person, right? You may smile tersely at this person, but deep down you know they’re lying. They just want to skip out on work or class. Clearly, this person is both lying and receiving special treatment by staying employed when you work your ass off and show up. I mean, nobody gets sick THAT much, right?
It’s easier to think that, isn’t it?
Now imagine this person is your best friend, your spouse, or your sibling. Imagine that you see how hard it is for them to make it through each day feeling miserable and worried that, along with everything else, they might get other people sick. See yourself holding their hand as they cry and tell you that they end up having to work three times harder when they come into work to make up the difference and that it’s all they can do to make it to the end of the day and collapse on their bed. Uncomfortable yet? Imagine it’s YOU.
In 2010, when the Affordable Care Act was being widely debated and just about to make it, I attended a town hall meeting in support. At the time, I was not yet married. I was underemployed between two jobs and in school to get my teaching credential, but not quite full-time enough to receive healthcare. My generally fair-to-poor health was worsening.
I listened to each conservative viewpoint during the meeting, about how apparently this act would be used to give free rides to illegal immigrants and we would all be footing the bill. They claimed that Americans could work for health care and if we didn’t have it, we should just get a job. I sensed that they didn’t understand how this could affect everyone, so I spoke up. I told them my story.
The cameras panned to me, because everyone wants to see the sad story of an attractive middle class white girl who can’t get coverage. THAT’S a story, apparently. I got so nervous I had to step away after my speech and use my inhaler. Afterwards, when I stepped back into the hall, I heard people stepping up to the microphone to dismiss my statement. I was clearly lying. That was a fake inhaler. I was a liberal plant, paid to say what I said.
Well, what the fuck do you say to that?
A few years earlier, I’d been on the receiving end of a similar claim, when I worked at Barnes & Noble. My managers approached me after two days out sick around the holidays. They, very gravely, sat me down and said that there was a rumor going around that I lied about my illness to get out of work. Well, this is no problem, I thought. I just showed them my medical band from the ER where I’d received breathing treatments for walking pneumonia. I showed them my release papers with the diagnosis. They looked me dead in the face and said “These things can be faked,” and proceeded to give me a verbal warning. I didn’t know what I could do. This was a private company and I was an at-will employee. They could fire me. So, I started going into work, even when I was seriously ill. Customers would complain that my runny nose was disgusting as I handed them money. Managers complained that I stepped away to use the bathroom too much to wash my hands. It was easier for them to think I was lying. Neater. And that year nearly destroyed me.
I have an annoying array of chronic illnesses that have been present since childhood. There’s the asthma, which I never grew out of, the depression and anxiety, diagnosed as bipolar in my late teens, medication-induced migraines, GERD that rendered me unable to swallow food for weeks at a time, ulcers, osteoarthritis in the knee at barely sixteen and cancer diagnosis at thirty years old in the breast. But those were only part of the problem. The main issue was that, in addition to all of these things I just got sick. I got sick every month, ALL the time. Just when I’d recover, I’d get something new. Or I’d fall down and hurt myself — deep in a brain fog from antibiotics, painkillers and a cavalcade of other medications I’m forced to take every day.
Like I said, though, nobody wants to hear this laundry list of ways in which my body sucks at keeping me alive. It’s much easier to hear just one, manageable thing. SO I developed a new tactic. I lie to convenience able people. I pick just one of my ailments when I come into a new job, and that’s the one I stick with. I don’t call out sick with the truth, which is that it was a bad virus, and then a knee injury from a fall, and then the virus turned into an infection, and THEN the scan from my infection was suspicious so they have to run follow up tests to rule out cancer metastases, and THEN I find it impossible to get out of bed for the invasive voice in my head that tells me it doesn’t matter how many pills I take, how much I exercise or how much spinach I eat because I’ll probably leave my three year old daughter motherless anyway. It doesn’t matter that I’m a fighter, or that I’m doing everything right, or that I’m a good person who deserves to live free of all of this shit. It still IS.
So I lie. I pick one thing. One understandable condition. Migraines. Or the osteoarthritis. Those seem to be a thing that normal people get. So, I just say my migraines are acting up, and everyone seems to get it, all breathing easily that I can be placed in a box — the “person who gets migraines” box — so that they don’t have to address the feeling they have deep down if I were to tell them the truth. Once I tell the truth, I’m immediately one of those people. Translation: I’m lying, overreacting, looking for attention, or just plain lazy.
So, lying seems to work out for me. It’s comfortable, convenient, and keeps fully able people from having to accept that there are people for whom this is their life. The problem is my lies erase people like me, and reinforce that feeling of immediate suspicion people get when someone has less energy reserves than they do. My able-passing lies placate them, an easy pill to take with a spoonful of sugar, but it does nothing for my fellow sufferers of chronic illness.
So, I’m done with that. I’m done slapping a smile on and pretending I just have a tummy ache when what I’m worried about is a tumor. Why? I’d love to say that it’s for my peers who suffer from invisible and chronic illnesses as I do. That would definitely make me sound good, wouldn’t it? But the truth is, I’m exhausted. I’m so tired of pretending that this dumpster fire that is my body isn’t an almost daily concern of mine. It takes a lot of effort, and I’m fucking tired.
But I’m so sorry to inconvenience you.