t h e w o r l d o f i n v i s i b l e i l l n e s s


Big foot small shoeBut you look so good.  It’s a phrase that follows anyone with a sadness or illness, follows them like a hornet homing in on a sweet target.

Having that phrase as a rallying cry for any special interest group misses a larger point:  no one likes to look like shit, much less be told so.

I’ve worked with plenty of people over the last 16 years and it is not very often that anyone looks as awful as they report feeling.  Does that mean they aren’t depressed or anxious or in pain or sad or sick or whatever?  So why does a depressed woman wear make-up?  Certainly it’s not with the intention of having it run down her face.

A woman with M.S. wrote to me recently and reported that she got really tired of people telling her she looked well when she felt anything but, so she tried an experiment.  For a time, she stopped wearing make-up, didn’t fix her hair or pay much attention to her clothes.  She purposely let the exterior reflect how the interior felt.  The results were mixed:  people were empathetic, but that came at the price of not being taken seriously.  Even worse, she wasn’t proud of herself; she liked looking good and if that meant that others didn’t know her past that, then so be it.  She went back to wearing make-up and looking like she wanted to look, even though the comments about her looking-better-than-she-is expected-to-look continue.

Maybe it’s the whole there-but-for-the-grace thing, like a magic wand that makes bad things like grief or disability disappear.

Could be,  like Jack Nicholson so vehemently put it, people can’t handle the truth.  Who can?  While you may not be able to imagine a life with paralysis, it doesn’t mean that others don’t go on with their lives.  We don’t like to be reminded.

Some of us might feel we’re not up to it; that, in the same situation, we’d fail at looking good .
love saying 5Do we really want someone to tell us we don’t look so good?  Speaking as a woman whose multiple sclerosis doesn’t always show, I can unequivocally give that a fat thumb’s down.  Nobody likes to admit they feel like hell (okay, some people do).  And it isn’t good form to remind others they look that way, either.  For the most part, we’re a society of liars; it’s how we get through our social day.  Doctor greets patient and says, “Hi, John, how ya doin’?”  John says, “Fine.”

It’s true, too, that when we don’t know what to say, we usually say something stupid, even though it’s intended to be uplifting or cheerful.  People are afraid of sadness or illness.

Nobody ought to have a lock on the phrase “But you look so good!”   To claim it is to say that no one else can have an emotional response to it.  It’s not only the disabled who dread hearing those words; it’s any one of us whose appearance belies the truth.

We all have culpability.  For the disabled who are offended by being told “you look so good”, there’s a responsibility to educate others about why the phrase is offensive.  Even more, it’s an exquisite opportunity to educate about disability.  Bring it to a 1-1 level, able to disabled.

After all, I wouldn’t be surprised at how often the non-disabled among us get annoyed by the very same phrase when it’s said to them.

Note:  Some of you are saying I’m ignoring the exclusionary word “but”.  But I’m not.  I’m enough of a re-framer of words to know that sometimes meanings are made where there is none.  I stand by saying that rather than being exclusionary, the use of “but” can be an expression of disbelief, as in “bfut she was here a minute ago.”  Try out this meaning, anyway; you’ll gain a lot of perspective.

Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where she conducts communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with KatheSkinner marriage & family therapistother professionals in order to reach more relationships affected by hidden disability.  She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to, and is an ardent-and-natural-teacher-without-a-classroom.  She has been diagnosed with multiple sclerosis for over 30 years.  More about Kathe at

Categories: Effect of invisible (hidden) disability on relationship

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