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A central male figure that is smiling while two sadder versions of himself are upset in the background.

Hiding My Illness

“You handle it so well.” “You really have it together.” “You look like you are doing well.” These phrases and others like them are things that I hear very often. In person, and especially on social media, you’ll likely see me smiling and even having fun (Gasp! Shocking, I know). I don’t look very sick and even when I do, I suppose I look like it doesn’t bother me. While one reason for this is certainly that many of my symptoms are of the invisible variety, the other big explanation is that I’m simply hiding as much as I can. It may be a shock to some, but even when a chronic illness has a huge impact on our lives, we don’t necessarily want people to see that.

More than meets the eye

I’ve talked before about how there is so much about my illness that people don’t see. Social media has a way of shaping our impressions of people. The thing is, most of the time, what is seen there tends to be of the overly positive variety. Sure, I’ll make some posts talking about MS, but those are alongside posts of me having fun with friends (and my dog – many, many posts of my dog).

People with MS are allowed to have fun

People who are sick are allowed, and do, have fun. The big difference is that we end up paying for that fun. For every smile you may see on social media, there are moments of me laying in pain on the couch that don’t get posted. Though, occasionally, I will post a picture like that because I’m paranoid about people thinking I’m faking it and having too much fun, which is ridiculous when you think about it. Outside of those occasional posts, I tend to hide as many of my problems as I can.

Fake it till you make it

I think most people with a chronic illness become great at faking smiles and acting like nothing is wrong; I know I have. For most of my life, I fight for people to not only think of me as the guy with MS (not always easy when you write about it like I do). Much of the time, when people ask how I’m doing, I put on a fake smile and say I’m “OK”. I’d say that’s a pretty common approach for a lot of folks who suffer from a chronic illness. The last thing any of us wants is for people to feel sorry for us.

Strategies to appear “normal”

My illness causes me enough pain, I don’t want it to have an effect on others, too. I don’t want sympathy, and I don’t want people to worry about me. A fake smile, leaning against a wall instead of using my cane, saying I already have plans when I’m just too sick to hang out, and even suggesting places that I know very well for meetups to allow me to keep up the ruse. are just some of the things I do to fake my normalcy.

I’m more than an illness

While not wanting to make others uncomfortable is a big reason I hide my illness, I’d say the number one reason is that I want to be known for more than my disease. I want people to see me as another person. It’s very easy for people to think primarily of a person’s disease, particularly if it’s one they know little about. MS is one of those diseases that many people have no real clue about, which makes it even more of an identifier.

We hide it well

Of course, along with that, I’m sure when I’m smiling and faking it so much, I get used as an example to some people who say “oh, I know someone with MS and he’s doing fine”. We’ve all heard that before, and I think that’s a big reason for this article; to say that, hey, that person with a chronic illness that looks like they’re doing great? They may still be struggling but they simply hide it well.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • wandaholt
    19 hours ago

    Thank you for accurately describing what I feel. SO TRUE. I work very hard at being “fine”. My o.k. days are the only ones I allow people to see. No one really wants to feel bad for you or with you. Except my poor husband who gets to see it all. Devin, you are the best writer about anything m.s. and I appreciate your work. I am with you in spirit.

  • wobk1o
    3 days ago

    I really am so tired of hiding my MS but on the other hand, I don’t like it when my husband tells EVERYONE! There has to be a better way…

  • wandaholt
    19 hours ago

    Understand your frustration wobk1o. My husband also tells too much truth to others and can’t understand why I hide it. Only us m.s. people appreciate the dilemma.

  • Tana
    5 days ago

    Thank you Devin. It’s hard work to try to look and act “normal” when inside you feel anything but. By trying to “just keep pushing through” I think I cause myself more emotional stress than I need.

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