What I Wish Someone had Told me About Chronic Illness

There is something I wish people would have told me, when I first came down with a chronic illness.

It’s something I don’t see discussed often enough.   It’s a truth that is unfortunate, unfair and very difficult to hear, but I it needs to be talked about. And I hope that in talking about it, I can help other people with chronic illness who might not understand what they see happening around them.

Here it is: When you are chronically ill, people will get angry with you. They will get angry and they will lash out and treat you like a bad person from time to time. This is bound to happen no matter how good your support system is. And– and this is the most important part– this will be in no way your fault. 

It happened to me again recently. I had a weird sore in my mouth– I sometimes get those even though I have healthy teeth. I don’t yet know if it’s a symptom of fibromyalgia or of something else. This one was right above a molar and hurting so bad it radiated to my jaw and ear. I have several medical professional friends online, so I asked in a facebook status if this sounded like an abscess tooth, if I should somehow go to the emergency room that Sunday or wait to see a dentist during the week.

A person I considered a friend, a woman who was NOT a medical professional, was furious with me. She posted bawling me out more than once, telling me to have some love for my daughter even if I hated myself so much and go to the emergency room now. She called me irresponsible. I was frankly shocked.
It turns out I didn’t have an abscess, for the record, just an oddly-placed sore. By the time the buses were running on Monday, the sore was gone. I’m grateful I didn’t waste that Sunday in the emergency room. I have a lot of different symptoms that would send a normal person to the ER that I just learn to ignore– chest pain, for example. Sometimes my chest and arm start aching, badly. But I know it’s just my fibro acting up, not a heart attack, so I take Aleve and hope nobody calls 911 if they see me clutch my chest.  Now I know to do the same thing if I get a sore in my mouth.

I went on being friends with the woman who bawled me out, and she went back to being nice, until this weekend.

The past several weeks, I’ve been trying out a new supplement. I am always trying out a new supplement. I also go to all kinds of medical doctors and take medicines as needed; I have a diet so strict I’ve gone down two clothing sizes since January; I do yoga and I have a sun lamp. But in addition to those things, I try out supplements and weird herbal tinctures to see what they do. Most are useless but some of them work very well.

This particular supplement worked too well. It was supposed to promote alertness and eliminate head fog, and it did a little bit. As a bonus, it messed up my sleep and gave me the worst case of anxiety imaginable. I thought I was going even crazier than usual. I knew that anxiety was one of the dozens of possible symptoms of fibromyalgia, so I thought I was just going crazy because of my illness and would have to add anxiety medicine to my usual cocktails. I finally tracked down the cause to the supplement’s high dose of kola nut extract, a natural source of caffeine known to cause anxiety in lab rats. I don’t know how the scientists found out that the lab rats were anxious, by the way; I just know that I read in some medical articles online that that’s what was wrong with them. I’d been buzzed on caffeine without any of the comforting benefits of coffee, and it was giving me horrendous anxiety.

I got off the supplement, and then I had anxiety AND terrible caffeine withdrawal. I drank more coffee to cope with it and the coffee just gave me jitters. I was miserable.

I moaned about my misery on facebook, because that’s what I do. I’m on the sofa or in bed for many hours of most days. It’s either spend too much time on Facebook or stare at the dust bunnies, and the dust bunnies don’t ever want to chat with me.

My “friend” was angry again, after being cordial to me for weeks. “Here’s something you can do. Next time, read the f*cking ingredients,” she growled. “Most energy drinks are just high doses of caffeine.”

I started to defend myself, to explain that it wasn’t an energy drink, but then I remembered that I’d seen this pattern of behavior before, so I deleted her comment and unfriended.

I wouldn’t say I’ve gotten used to people being angry with me, cussing at me, assuming I’m cavalier or careless when I describe my struggles with chronic illness. It’s not something that ever becomes ordinary. But now that I’ve come to understand the pattern, it hurts me less. For the longest time I couldn’t tell understand why seeing me struggle made them so angry with me.

I now know that seeing a person with chronic illness scares people. And when people are scared, they tend to lash out. They shouldn’t. What they are doing is wrong. They ought to have more self-control and different ways of coping than lashing out. But they do. And that is not the fault of the person with chronic illness.

It is very easy to internalize it when people lash out at you. After all, you’re already sick, and being sick can be traumatic. You’re probably already in a worn out emotional state just from all the crap you have to deal with on a daily basis. And now here’s somebody angry and offended at you for being sick.  You run a great risk of thinking that that must be your fault somehow. I know I do. I felt guilty for trying that stupid supplement in the first place. Every day I juggle so many different balls to try to keep my poor health from getting even poorer, it’s natural to expect I’d make mistakes quite often. But when I do and people get angry at me for my blunders, I blame myself.

But take it from me: it’s not your fault.

You are not the problem.

You have a problem, a chronic illness, which you live with every day, but other people don’t. Other people live in fear of your usual everyday routine. They’re terrified of getting sick– with good reason. Getting sick is terrible. They go to great lengths to avoid sickness and tell themselves they’re safe, that the measures they’ve taken are enough and they’ll enjoy good health. They tell themselves that they’ve earned good health. They pretend that a sickness which changes the course of their lives is something that can’t happen to them. I’m not saying everyone in the world who doesn’t have a chronic illness thinks that way. But it is, in my experience, a form of denial which quite a few healthy people engage in.

And now, here’s a sick person in front of them. This person will likely be sick for the rest of their lives. This person is visibly doing all kinds of things to try and be as healthy as possible. They’re carrying a water bottle. They’re eating their veggies. They’re going to the doctor and taking their meds. They take vitamins. They do yoga. And yet they’re sick.

That’s scary.