The Best and Worst Responses I Got After Opening Up About My Chronic Illness


When you have a chronic illness, it’s often invisible. People can’t look at you and tell you are fighting things like postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), fibromyalgiamyalgic encephalomyelitis/chronic fatigue syndromedepressionanxiety, obsessive-compulsive disorder (OCD), rheumatoid arthritis, chronic migraines or complex regional pain syndrome (CRPS). The list is endless.

As a result, you may find yourself making up reasons why you can and can’t do things. They usually revolve around the truth, but they’re half-truths and you try to keep it light. You don’t want to bring down the mood or be too “weird” or “annoying.” Eventually, though, you sometimes just give in and tell the truth about why you’re acting the way you are.

When and how you do this depends on you. I personally don’t share with many people, partially because I’m embarrassed and don’t want people to think of me differently than “normal,” and partially because I don’t want people to feel sorry for me or try to “fix” me.

“Coming out” about our health history is incredibly stressful. Somebody asked me why I wanted to call it “coming out.” It’s because I think it’s big; it’s a huge secret I’ve been hiding. It honestly feels like I am living a double life because people have no idea about what goes on regarding my health. I have to be careful about everything I say and do. I’m pretending to be healthy.

Letting this critical information fall into the wrong hands can be devastating. People react poorly, use it against me, say insensitive things and sometimes it can affect how people treat me. I’ve had teachers find out about my illness and tell me I should reconsider my choices in school. Friends started treating me differently after they found out. People even stopped being my friend altogether because they couldn’t handle being around me.

So saving the best for last, here’s the worst response I’ve gotten: A stranger on a social media app responded to an anonymous post about whether or not it would be disrespectful for me to use the phrase “coming out” when referring to my illness. (The verdict is that it’s OK.)

The person responded by asking me why I even needed to “come out” about my illness to people, so I explained that when I want to get to know somebody better or if I’m going to start spending more time with them that I have to tell them about my illnesses for various reasons. The person responded by saying that anybody who is disabled wouldn’t need to “come out” because everybody would know by looking at them or because people who are disabled are so desperate for attention that they make a big deal out of it within five minutes of meeting somebody.

This is all wrong. It’s just not true. If you look for specific things, you might be able tell I’m not OK. You can see the slight limp, that it takes me longer than some to stand up and straighten my legs, that I close my eyes for a second because I’m dizzy or that I’m breathing unusually to try to cope with pain.

In general, though, healthy people don’t look at me and just know that I am sick and in pain every day. On top of that, I don’t share with people immediately that I have a disability. It’s none of their business; they do not need to know. Even people I spend a good amount of time with often don’t know. I hide it on purpose because of the reasons above. In fact, my own extended family doesn’t know. My parents, brother, boyfriend and closest friends know, but nobody else knows.

People who think that all disabilities and illnesses are visible are simply uneducated and close-minded. I tried to reason with this person, but it wasn’t successful. People can’t understand what we go through if they don’t see it firsthand. And that’s OK. We learn to live with it. This response, though, was hurtful, despite the fact that I didn’t know this person. I didn’t take it personally, but it’s so frustrating to know there are people who will continue to judge me based solely on appearance. It will prevent acceptance. There is always more than what meets the eye when you’re looking at a person.

Now for the best: I was talking to a long-time friend. We’d grown apart some but started to get close again, and I had made a promise not to keep anything from them. This was really stressful because we were just starting to get close again, and I was worried knowing all of this about me would scare them away. (Believe it or not, this actually happens often.)

They knew I was afraid because I’d warned it was big and could change how they saw me. I was trying to find the perfect moment. I wanted to sit and talk in person, but we couldn’t make it happen. Finally, one night I gave in and just started typing. I sent one text and then a second, explaining everything as simply as possible but also trying to be realistic and hoping I could help them understand what I needed and why I acted the way I did sometimes. The response brought me to tears. (Hey, most things do these days, but this was a happy cry): “Wow, you’re a rock star for still doing everything that you do, but you didn’t have to tell me all this. It doesn’t change how I see or feel about you. It doesn’t define you.”

That was unexpected to say the least. This is single-handedly the most supportive thing anybody has said to me about all of my issues. To top it off, it’s been months and still there’s no awkwardness, no judgment and no hint of them ditching me. I wish everybody were as accepting and open-minded as my friend. It was such a relief and since it’s so stressful trying to share with people what we go through, responses like these are life-changing.

If you’re reading this and you’re ever on the receiving end of a person sharing their biggest secret with you, please remember how hard and scary it is for us to have to share. We chose to share with you because you’re important to us and we want you to understand why we act the we do so that you don’t leave us behind.

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