The Mighty Logo

The Facebook Message That Showed Me How Unaccepting People Can Be of Invisible Illness

The most helpful emails in health
Browse our free newsletters

I have what many consider to be an invisible illness: major depressive disorder. In fact, some people don’t consider it an illness at all, instead choosing to think of it as a personal failing. I didn’t worry too much about those people, thinking that they were in the minority — until a friend who also has an invisible illness got a message through her Facebook page.

The message read, in part, “I have read about your illness and your failures and how you are always too tired to do things. I have to say I am surprised your family has put up with so much of this constant inability to finish things. You seem to always need to be taken care of. My warning to you is, be careful. At some point, people will get tired of always having to take care of someone and will move on and you will be none the wiser until too late…”

It wasn’t until she shared that message that it hit me just how unaccepting people can be. I have to wonder if the sender of the message would have sent this if the illness hadn’t been invisible. Would the sender have chosen to say these things if the person she was speaking to had a more visible injury or illness? Would she have warned someone who’d had a heart attack that they should stop needing “to be taken care of?” Would she have told someone who’d lost a leg that they “people will get tired of always having to take care of them?”

My guess is no. So what can those of us with invisible illnesses do?

Take care — of yourself and those around you. Maybe there are some days when you can’t do anything, when getting up in the morning and taking a shower are beyond your reach. Understand that’s OK, and you need to do what you can, when you can. On a good day, make a batch of chocolate chip cookies or a few meals to freeze. On a good day, get through the laundry. On a good day, get a manicure or a pedicure or a massage. Remember that you have to set your own standards, and take care of yourself as best as you can.

Educate. When people try to tell you what you “should” be doing, educate them about what you can do. Sometimes people really don’t understand that an invisible illness is a real illness. Tell them about the problems you encounter, tell them about the doctors you have seen (even if the doctors haven’t been helpful), and tell them what you go through on a daily basis. Remind them that just because they can’t see something doesn’t mean it doesn’t exist. Educating someone doesn’t necessarily mean they will understand, but it is the first step to getting them to accept it.

Ignore. Easier said than done, I know. But sometimes you have to ignore people who make negative comments and try to make you feel bad about yourself. They haven’t been there. They don’t know. Realize they can’t understand how you feel, and you can’t understand how they feel. Worrying that people will stop loving you and caring about you and taking care of you isn’t helpful. It won’t make you feel better. It won’t make the people who love you and care about you and take care of you feel better.

Don’t let an outsider ruin your day. Until they’ve had the experience themselves, they can only rely on the education you’ve shared with them. And maybe they’ll never understand it. That’s OK. It shouldn’t affect you; let it only affect them. If they feel better by making you feel worse, don’t help them with that.

Originally published: February 20, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home