Anyone with an invisible illness can tell you that at some point they were told that they “don’t look sick”.
That comment often ranks first among a list of things you shouldn’t say to someone with IBD, but it never really bothered me.
I know I likely stand alone in saying that, since being told that you “don’t look sick” when your life’s under constant assault because of illness can be hurtful, but hear me out…
In the past several years of dealing with Crohn’s Disease, I’ve been told everything from “you don’t look sick” to “you look like you have terminal cancer” to “you look like a ghost” (several times!).
Guess which hurt more? The latter two, of course.
Now, I don’t expect the general public or even close family and friends to know how I’m feeling inside, but I’d rather be told that I look healthy instead of being told that look sick.
Why? Because I know that I have a chronic illness and don’t need the constant reminders from other people. So being told I look healthy, even when I feel like absolute shit, is better than the alternative.
I think that for the most part, people have good intentions when they make a comment like that.
They don’t seek to intentionally hurt your feelings (well, some might), but it illustrates just how important IBD awareness is.
I can understand how many people with IBD can take offense to such a comment; it appears to minimize how we’re actually feeling or the severity of our illness, and it shows an apparent lack of empathy by the other person.
But I feel that my reaction has less to do with what the other person said and more to do with how I’m dealing with my illness.
If I hear the comment, I know that it’s a great opportunity to raise awareness of what having an invisible illness is really like. Feeling upset or offended won’t benefit me or the other person, and it misses the opportunity to educate.
Since not everyone is walking around with a print of their ulcerated colon on the front of their shirt, open discussion is an ideal way to handle these comments.
Now, where can a comment like “you don’t look sick” be a real problem? When it’s said by your doctor or caretaker, since they are the ones who should know that looks can be deceiving when it comes to illness. I can only hope that this is never heard coming from your own doctor – if it has, then it may be time to look for a more understanding one!
If you find yourself boiling over a comment like “you don’t look sick”, take a moment to understand why you feel so upset, and then work to change that feeling.
I think that if there’s a true lack of understanding between the person making the comment and you, then you have a golden opportunity to change someone’s perspective.
How have you handled being told that you “don’t look sick” when you’re feeling like complete rubbish?
You hit it the nail right on the head here Eric !
I have some friends with MS. And I have an uncle with Crohn’s and a friend with it. I have Asperger’s which is an invisible disability.
Hi, I cant relate to “but you don’t look sick”, due to being 4ft 8in. and 75lbs from the crohns, but I have family members who don’t know what its like to have an incurable illness. Even though my illness’s are documented and physically I look it, I still get snide and condescending remarks from them, and yes it hurts.
Hi Sarita,
I’m sorry that you don’t have understanding family members, but you said it your self: they don’t know what it’s like to live with your illness. That still presents an opportunity to educate them, and if they still give you negative remarks you have the power to let it go. Nobody can hurt you without your permission.
Take care. I know how tough Crohn’s can be.
Eric