If Youāre Able-Bodied, You NEED To Read This RIGHT NOW.
Lately Iāve 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. Thatās multiple sclerosis. Itās an autoimmune disease wherein the bodyās 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 wonāt 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 canāt vocalize it when something is bothering her. Why? Because able-bodied people believe AND SAY very insensitive things about her, and thatās more unbearable to her than her ACTUAL DISEASE.
āOh, I know, Iām so tired too, I didnāt get any sleep this weekend!ā
āWhy donāt you just take a nap/drink a coffee?ā
āYou should try changing your diet, maybe if you didnāt drink so much sodaā¦ā
āYou donāt look sick/you seem fine!ā (I think sometimes people mean this as a compliment. Itās not.)
And worse are the people to whom she has explained whatās going on and why she canāt 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?
āWhen I tell someone about my disability, I donāt want them to do anything. I donāt want them to feel sorry for me. I donāt want them to try to help me. I just want them to know something.ā
She just wants them to understand, so she doesnāt 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, āI know whatās going on here,ā and not say something insensitive that chips away at her.
So you know what Iām asking everyone who reads this to do tonight? Open Google and search āautoimmune diseases.ā 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 theyāre classified that way, what they can do on a broad scale.
These are just one type of so-called āinvisible illnesses,ā 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 didnāt tell you. And then think about how society makes them feel like theyāre not allowed to talk about how they hurt, lest they be judged as complainers who donāt try hard enough. Think about how they have to deal with that STACKED ON TOP OF the debilitating illnesses theyāre 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 donāt delegitimize the symptoms of invisible illnesses, and use those alternatives ALL THE TIME, just in case youāre talking to someone that doesnāt want to let on that itās their illness thatās causing it.
We can all do a lot by making this effort. Itās worth it to make the world a more hospitable place for those among us who struggle most.
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