If You’re Able-Bodied, You NEED To Read This RIGHT NOW.
Lately I’ve been making a point to go over and spend some time with my mom. Today I found her trying to be hospitable but clearly somewhat irritated. After some unrelated conversation, she finally told me what was on her mind.
My mom has MS. That’s multiple sclerosis. It’s an autoimmune disease wherein the body’s immune system begins to attack itself - specifically, the myelin sheaths that protect the nerve fibers in the brain. Some people with MS also experience damage to the nerve fibers in their spine. Essentially, the nervous system is the focus of this disease.
There is more than one form of MS. My mom has relapsing-remitting MS. That means she has periods of time where her symptoms are less severe (note: LESS SEVERE, not gone) and other times - flare ups - when her symptoms are debilitating. The symptoms are varied and there are a LOT of them. Not everyone has the same symptoms, it just depends on how much damage has been done, and where.
Mom experiences extreme, debilitating fatigue the likes of which no able-bodied person can comprehend. It strikes without warning and puts her down fast, sometimes for days at a time.
She experiences nerve pain. Phantom itching. Brain fog. Trouble with recall. And these things are in addition to other diagnoses, which are her business and won’t be discussed here, but often interact with her MS in unbearable ways.
But do you know what mom was most upset about today?
The attitudes that people take toward people with invisible illnesses.
See, mom feels like she has to hide her symptoms and try to behave as much like an able-bodied person as possible. She feels like she can’t vocalize it when something is bothering her. Why? Because able-bodied people believe AND SAY very insensitive things about her, and that’s more unbearable to her than her ACTUAL DISEASE.
“Oh, I know, I’m so tired too, I didn’t get any sleep this weekend!”
“Why don’t you just take a nap/drink a coffee?”
“You should try changing your diet, maybe if you didn’t drink so much soda…”
“You don’t look sick/you seem fine!” (I think sometimes people mean this as a compliment. It’s not.)
And worse are the people to whom she has explained what’s going on and why she can’t just overcome it with sheer willpower or some Tylenol or a cup of coffee, and who still say the same insensitive things to her.
Do you know what she said to me today?
“When I tell someone about my disability, I don’t want them to do anything. I don’t want them to feel sorry for me. I don’t want them to try to help me. I just want them to know something.”
She just wants them to understand, so she doesn’t have to waste spoons explaining again and again. Or bottling until she bursts. Or be judged as lazy, or a miserable complainer. She just wants people to be told the facts, and then know them, so that when her disease strikes, they can say to themselves, “I know what’s going on here,” and not say something insensitive that chips away at her.
So you know what I’m asking everyone who reads this to do tonight? Open Google and search “autoimmune diseases.” See about the various types that there are. Click on a few. You can start with MS. Maybe move on to Lupus. There are a bunch. Or just read about what autoimmune diseases are and why they’re classified that way, what they can do on a broad scale.
These are just one type of so-called “invisible illnesses,” and they account for a good number of disabilities experienced by people the world over. I want you to think about the ways that people can hurt that you would never know about if they didn’t tell you. And then think about how society makes them feel like they’re not allowed to talk about how they hurt, lest they be judged as complainers who don’t try hard enough. Think about how they have to deal with that STACKED ON TOP OF the debilitating illnesses they’re already living with.
And then I want you to think long and hard about the meritocracy we live in, and what you can do to be more mindful of the way it disenfranchises disabled folk. Think of ways you can respond to people that don’t delegitimize the symptoms of invisible illnesses, and use those alternatives ALL THE TIME, just in case you’re talking to someone that doesn’t want to let on that it’s their illness that’s causing it.
We can all do a lot by making this effort. It’s worth it to make the world a more hospitable place for those among us who struggle most.
