What is "Illness Shaming"? ... and How to Knock It Off

I want to talk about stigma. When I do my presentations, I actually come out and outright reject the word stigma, because the actual definition is something like, “a mark of disgrace.” Yeah, that this someone has an actual mark on them.

But when you really think about stigma and shame, ask yourself, where does this actually come from? Is a person actually marked? Are they disgraced? But isn’t grace assigned? Yes, grace can be one of those things that’s in the mind of the beholder. Likewise, that’s absolutely what stigma is. It’s not a mark on one person. It’s another person’s opinion on whatever that so-called “mark” may be.

When we have chronic illnesses, chronic pain, invisible disabilities, even visible disabilities … even any way of being or living that does not fit neatly into our societal norm, there almost inevitably comes some sort of stigma because of what isn’t understood.

It’s why those of us with hidden disabilities overexert ourselves to “pass” as able-bodied.

Disability stigma can come from all angles, but when I teach about it, I try to simplify it into three specific categories. And I don’t call it stigma, because it’s the wrong word. I’m not marked. We’re not marked.

I call it illness shaming.

And it can be defined with the three avenues of judgment that come at us:

Judgment of statements.
Judgment of actions.
Judgment of the disease/condition.

I’ll explain each one.

Judgment of Statements

is when you assume something that someone says is anything other than what they truly mean. It’s when you think someone is whining or exaggerating or using a condition as an excuse. Communicating about our conditions is really hard. It’s always difficult to explain what can’t be seen. That’s why we’re not all quantum physicists, or enlightened Buddhists. We’re doing the best we can and we just need you to believe what we’re saying.

If we say we have a condition, believe us. Don’t say, “Did a doctor diagnose you with that?” Also, please always be extremely mindful that conditions differ for everyone. Your one friend with lupus may be able to do a lot more than your new acquaintance who has the same condition. Don’t assume the new acquaintance is lying to you because it’s outside your existing understanding of what a condition is. The same with treatments. Just because a certain treatment got your sciatica taken care of, doesn’t mean it’ll take care of mine. And please, please, don’t call me weak or having a lower tolerance of pain because you had the same thing and didn’t talk about it like I do. It’s different for everyone, and I’m just trying to communicate, and I’m not lying.

Judgment of Actions

is very similar to judging statements: it’s taking something someone does as anything other than what it truly is. It’s assuming someone who sleeps until noon is lazy. The truth may be they have a condition called delayed sleep phase, or they have debilitating depression that day, or they could have jet lag. You never know. Try to understand the underlying truth without making hurtful assumptions.

An example I love to give when I present is about my cognitive impairment that is a symptom of my fibromyalgia. Sometimes I slur my speech. Sometimes my balance is off and I may stumble. My line about this when I present is, “You could assume I have something other than coffee in this cup.” It gets a nice laugh. But it’s my reality. I was saddened not long ago, actually, when this impairment became a focus (displacing my actual message) in a very short article written about me by local press when I presented for students at a Pennsylvania University. Check out this snippet:

photo credit: associated press | Click image for full article and credits

While we’re here, I’ll clarify that I was misquoted and paraphrased. For one, I don’t say that I’m competitive. I explain that I’m self-reflective. What’s truly telling here, and something to learn from (going back to judgment of statements), is how she wrote, “Irene said she was tired and a bit weather-affected.” It would have been more gracious to say, “Irene was tired and a bit weather-affected.” Notice the difference? The difference is one word, and that one word clearly delineates level of belief.

Judgment of the Disease/Condition

manifests in a few ways. One is how stigma is just automatically assigned to certain conditions, and again, it’s not that there’s something bad/wrong/evil about the condition. It’s a negative and unfair societal opinion. Bipolar disorder, for example, as well as many mental health conditions come with a lot of shame, and there is often an intersectional exacerbation with certain genders and cultures. These conditions are legitimate diseases that can be helped no more than you can help it when you catch a cold. People get sick. It’s an illness. It’s not their fault.

I’ll make a special plea for you to stop using the word “bipolar” as an insult when you don’t like the way someone is acting. People who have to live with this terrible disease every day are insulted exponentially more by your words than your intended target. And you’re feeding a painful stigma.

So blaming us for our conditions is another way of shaming the disease. Blaming us for causing it. Blaming us for choosing it, choosing to keep it, choosing to avoid treatment, choosing to relish in the attention.

Do you really think anyone would actually want what we have?

OK, fine, there are some people who do choose to be sick or even pretend to be sick, but that, actually, is a mental health condition. They actually are sick, too.

Here’s the great global answer for these situations. If someone tells you they have something, believe them. If they’re lying, it doesn’t hurt you. If they’re telling the truth and you doubt them, it hurts us all.

Mostly, we’d give anything to be better. To have all the things we can’t have because of what we do have.

Finally, I’ve got to get real here. That whole blame thing? Well, sometimes we do cause our own conditions. Sometimes our own actions trigger a condition or a disease that we’ll have for the rest of our lives. I caused my fibromyalgia. I was working three jobs at once and so overwhelmed myself that I triggered this illness I’ll have for the rest of my life.

Have you never made a mistake? Have you never made a mistake that has lifelong consequences? Are you still that same person who made that mistake? Why should someone be blamed the rest of their lives for something they did at one moment in time? We shouldn’t. It’s bad enough we have to live with it.

Don’t shame me for talking about it.

Yes, I’m going to keep talking openly about my fibromyalgia, chronic fatigue syndrome, arthritis, degenerative disc disease, and irritable bowel syndrome. And my current battle with a herniated disc. I’m not whining, I’m not making excuses, I’m not exaggerating, I’m not attention seeking. I’m communicating, and I’ve got five very good reasons for doing so. They’re outlined in Chapter 2 of my book, which you can click here to read.