Strategies to respond to "But you don’t look sick" with empathy, understanding, and effective communication about invisible illnesses like Lyme disease. Read for tips and thoughtful responses.
In my memoir One Tick Stopped the Clock, I describe a scene early in my convalescence when I run into a hometown friend’s mother at the post office. When I explain why I’m in back in town, she replies, “But you don’t look sick.” Her well-intentioned words frustrate me because she can’t see how I really feel. They make me question whether I should have put myself “together” for the outing—changing out of yoga pants, applying makeup, doing my hair—or if I should have stayed disheveled so that my outer appearance matched how I felt inside. The words make me long for the days after a knee surgery when a brace and crutches served as props to let people know that my injury was real. They lent people to ask what had happened, to wish me well, to even applaud me for sustaining and recovering from a serious athletic injury.
With Lyme and other invisible illnesses, there is often no such acknowledgement or encouragement. Not because people don’t care. Not because they don’t wish you well. Not even, necessarily, because they don’t believe you (though there certainly are a fair share of naysayers). It’s simply because so many debilitating symptoms of these illnesses happen on the inside: brain fog, sleep disturbances, migraine headaches, sensory overload, and other neurological symptoms. Fatigue can sometimes present as a wan fan or droopy eyes, but sometimes those get covered by makeup. And some days with chronic illness are pretty good. So you might not look extremely sick every minute of every day, but that doesn’t mean you aren’t.
In a later scene of my book, I wish that someone could peel back my skin so that they could see all the pain and fatigue underneath, see the spirochetes having a field day in my body. I realize that I, too, can’t see underneath someone else’s skin; that they, too, may be suffering in ways I don’t see or understand. It reminds me that we all need to be a little kinder, because we never know what someone else is really going through.
And that’s the thing about “But you don’t look sick”: it’s often meant kindly. We hear it as a dismissal of our illness because we are defended from being invalidated by so many medical professionals and lay people alike. Unless “But you don’t look sick” comes from a doctor (and if it does, find a new doctor!), it’s usually coming from someone like my friend’s mother who isn’t familiar with the situation and is just trying to say something nice. Even now, years after hearing this platitude myself, I still have to stop myself from saying, “Well, you look great” to someone who is otherwise not feeling like themselves, whether they’re sick or pregnant or stressed. What I mean as a compliment will come off as a slight, so I shift to something more empathetic that validates how the person has told me they feel versus how I think they look.
Still, many people are going to say, “But you don’t look sick,” and it helps to be prepared with a response. Here are some tips:
- Rather than being accusatory (“I hate when people say that!” or “That’s so invalidating!”) try using “I” statements to express how such comments make you feel.
- Acknowledge that the person likely means well. Let them know that the intention of their words doesn’t match the impact.
- Think of ways to gently show the person what they cannot see, teaching them about your illness without being angry, defensive, or mean-spirited. Think about the response you want to get. As my grandmother used to say, “You get more bees with honey than you do with vinegar.”
Here are some sample responses:
- “I appreciate that, and I know you mean well by saying it, but comments like that can be hurtful because they invalidate how I’m feeling on the inside.”
- “Thank you. I know putting myself together to go out sometimes masks how I really feel inside.”
- “I know, and that can be hard for me to hear, because inside, I’m feeling really awful. I wish my symptoms were more visible.”
Use your response as an opportunity to tell the person more about how you really feel, or about your illness, if they seem open to hearing it. If they don’t, then don’t worry about them. You don’t have energy to waste trying to convince people that you’re sick. Spend your time trying to get understanding from the people from whom you really need validation—your medical practitioners, your family, your close friends. When others make flippant comments and it doesn’t seem worth explaining your reality to them, you have the power to simply say, “Thanks,” and walk away.
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