Another take at living with lupus and hearing ‘you don’t look sick’

How I'm evolving beyond instant irritation at such once-frustrating statements

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by Candace J. Semien |

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We’ve all heard it. “But you don’t look sick.”

There’s also “You still look good,” “That weight looks good on you (or off you),” and “I couldn’t tell you were that sick.”

For quite some time, conversations among people living with lupus, which I have, or other chronic illnesses have been infused with disdain for one or all of those statements.

Surely, we’ll say, the person saying them had to realize how insensitive, ill-timed, or crude their words were. Didn’t their tongue prick with correction while they spoke? Hadn’t some part of their frontal lobes signaled an error in progress?

No. Not at all.

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Many times, people are clueless about how to react after hearing you’ve been terribly sick or hospitalized because of an incurable and invisible condition, such as lupus or sickle cell disease. They don’t know that certain phrases — i.e., “You don’t look sick” — are often better left unsaid.

Can you imagine how many thoughts that are better left unsaid would actually go unsaid if we could offer little caveats or cues moments before they were spoken?

My evolving responses

Recently, after stowing myself away for months and hammering through varying stages of a lupus flare, I finally ventured to an outdoor community concert. A former co-worker asked what had kept me away for so long. I reluctantly shared my diagnosis, to which she responded, “Wow, you don’t look like you have lupus!”

I expected that or a similar response, so I took a deep breath and nodded. Then I found a reason to end the conversation without replying directly.

Cue the inner screaming woman.

No, I don’t look like I “have” lupus. No, I don’t look sick to their distant eyes. Yes, the weight loss (or weight gain) looks good. No, there’s no way they could tell I was “that” sick.


They had no cue, no warning, so they said what they quickly thought to say. I’d heard it umpteen times, and each time I nodded in reply and left the conversation. If I took these moments as opportunities to spread awareness, then that nod-and-leave move was not the best strategy. I’m typically not the one to grab the mic for some kind of lupus shoutout or battle cry, but I’ve developed in my willingness to give insight when needed.

And for the first time, I considered the intention behind someone saying “You don’t look sick,” as a colleague here at Lupus News Today discussed. What if the person behind those words was hoping to sound optimistic? What if they were trying to offer reassurance? What if in that moment they were offering me their belief that the worst parts of my illness were behind me?

What if they were genuinely celebrating a moment of healing with me?

I repeated those questions until the irritation abated. Now, I choose to see all of those once-infamous phrases as compliments.

From the inner screaming woman who loathes sharing her diagnosis, I’ve become the one who responds with a cordial smile and says, “You’re right, and I celebrate that I don’t look sick.”


“Thank you for the compliment.”

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.


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