“You gonna stay in bed all day?”
“When was the last time you went to the gym?”
“We’ll only be standing for a few hours.”
You wouldn’t say these things to someone who uses a wheelchair, someone who has an obvious disability. So why is it okay to say these things to someone with an invisible disability?
Some of you may know that I have a condition called POTS, which stands for Postural Orthostatic Tachycardia Syndrome, also known as dysautonomia. What does that mean? Well, like most things, it varies from person to person. Though usually a disease for teenage girls that they eventually grow out of, I was lucky enough to get it as an adult. As a result of a faulty automatic nervous system, I have poor circulation that causes me to faint frequently from lack of blood (and hence oxygen) in my brain. As a result, I have all sorts of other problems: fatigue, weakness, memory loss, issues with temperature regulation, and adrenal spikes and deficiencies. Super fun.
But on the outside, I seem normal. (Okay, physically, that is. I hear all my friends protesting that I’m a dork or a weirdo or a goofball.) But I look like I should be fine.
So I don’t blame anyone for any assumptions. How would a person know? However, as someone with an invisible illness that significantly affects my life, and someone who has several family members with invisible illnesses such as MS, RA, T1D, etc., I wanted to share some things that might help anyone with a friend, family member, coworker, or acquaintance with an invisible illness understand.
Note before I begin: One person’s experience will never be the same as another person’s experience. Even people with the same disorder/disease will have different symptoms and different degrees of severity of those symptoms. Thus, in the following, I’m speaking only for myself. I can’t speak completely to anyone else’s experience.
1. “Good” means something different for me.
“Good” means I got out of bed without fainting. “Good” means I have enough energy to laugh, smile, maybe even take a walk. And “pretty good”? If I’m conscious, I’m “pretty good.” No, I don’t feel “normal” today. I never feel “normal.” But I’m doing pretty darn well for me.
2. I have good days and bad days.
Just because I could do it yesterday doesn’t mean that I can do it today. Alternatively, just because I said I was unable to do it yesterday doesn’t mean I can’t do it today. I may have stood for three hours yesterday, but if I stand more than twenty minutes today, I’ll faint. I was too dizzy to go out last night, but I feel perfectly fine tonight.
I’m not making excuses to get out of things. My state of being changes daily, hourly, and when I make plans, I can’t predict what my body will be doing when the time comes. Please be patient with me. Trust me, I’m probably more upset with myself than you are.
3. Stories of, “Oh, yeah, I knew a girl in high school who had POTS, but she just sat out in P.E.” are not helpful.
I’m glad you’ve heard of my condition before! However, as I said earlier, everyone is different. Just because that other person could do something doesn’t mean that I can. To go back to the wheelchair analogy, someone with an amputated leg can probably still walk with a prosthetic. Someone with lower body paralysis can’t. Telling me I should be able to do something just because someone else could hurts. And being the idiot I am, it will probably lead to me trying to do it even though I know I can’t and getting injured.
4. Sometimes I have to make choices.
“When was the last time you went to the gym, Alyssa?” “Yeah, because you don’t move.” Thank you for those erudite observations. You’re right. I don’t work out. Why? Maybe because I have 17 credits, a job at the library, work as a literary agent, work as a freelance writer and editor, and work on the school newspaper. I have a limited amount of energy per day.
You could compare it to money. I have fifty dollars a day and I have to make a choice. I can spend forty dollars of energy to go to the gym, or, for the same amount of energy, I can go to classes for ten, go to work for ten, work on the newspaper for ten, take care of my clients for five, and do my homework for five. Both of these options leave ten dollars of energy for other daily activities, but in one case I’m failing classes and I’m fired. Choices.
5. No, I’m not going to “get better.”
“Maybe you can do that when you’re better.” Unfortunately, I can’t wait for that. I don’t have a cold that will be over in a few days. Maybe I’ll have my Jesus moment when I’m miraculously cured, but barring that, this is how I am. You may be trying to make me feel better, but you’re not. Instead, work with me to figure out a way to achieve my goals the way I am.
6. I hate making a scene.
Trust me, it isn’t pleasant to faint. I’d avoid it if possible. But sometimes I can’t. I’m never trying to be dramatic. Chances are, I’ve been warding it off for as long as possible, trying to get to a discreet location or stop it before it happens. Please stay calm. In my case, I’m perfectly fine, and the EMTs are just going to be annoyed at all of us if they get called again. And please don’t be upset with me for interrupting something. I’m already upset with myself for it.
7. This may be new for you, but this is every day for me.
It might be scary for you to see me lose consciousness. You may not have any idea what to do. I understand. But this is my life, and it doesn’t faze me. Listen to what I tell you to do. I guarantee I know better than you do what to do for my obscure illness, even if the things I tell you sound silly. And please don’t be shy to ask questions or discuss it with me afterward—or even before! It’s not silly to be upset; it’s silly not to seek answers from someone who experiences it every day.
8. Yes, I’m embarrassed.
I want nothing more than to just be “normal.” If I’m flaking out from a commitment because of my POTS, that’s not me making up an excuse. I’d come up with any other excuse first; I don’t want to remind you of my condition any more than I can help it. Sometimes I do stupid things I shouldn’t do just so people won’t judge me: I take the stairs even though I should take the elevator, stand in church so people won’t judge me for sitting, stand on the train or the subway because I don’t want anyone glaring at a young woman for taking a seat. Half the time these situations end up being even more embarrassing because I faint. I’m very self-conscious. I’m constantly embarrassed. I know that it isn’t my fault if I can’t do something, but I always feel like it is. I worry that I’m annoying or that people would be better off without me. I need to be reminded that I’m accepted just the way I am.
9. I just want to be treated like any other person.
My body is stupid. That doesn’t mean I’m any different than anyone else. I try to live my life to the fullest. If I’m not calling attention to my body, you don’t need to either. I don’t need to be babied. In my perfect world, people think of my personality, humor, accomplishments, interests, and everything else before they think of my condition. As much as possible, I just want you to think of me as a good friend, a loving family member, an attentive student, a hard worker, a quality employee.
To conclude, people around me have been far sweeter and more understanding than I could ever wish for. But I hope that maybe this might make you pause for a moment, and before you judge a person, realize there might be something more going on than you think.