Even with lupus difficulties, we still hear ‘But you don’t look sick!’

We can help others understand what 'sick' really means with a chronic illness

Marisa Zeppieri avatar

by Marisa Zeppieri |

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Having lived with lupus for decades and having spoken to countless chronic illness warriors over the years, I’ve realized that while our varied symptoms hit us differently, we all face one unifying dilemma: toeing the line of looking sick enough that medical personnel and others take us seriously while also looking presentable enough that we aren’t judged by all of society.

News flash: Adopting this look — whatever it is, as it’s defined by the criteria of the public eye — seems basically impossible. Let’s dig into this truth a bit more.

For some of us with lupus who aren’t experiencing visible symptoms, such as sores or rashes, or wearing telltale medical devices, we have an almost impossible time getting others to grasp how we’re feeling unless we express it verbally. When meeting us, most people can’t see how much physical pain we’re in, how lack of sleep is interfering with our activities, or how fever, upset stomach, or medication side effects are meddling with our quality of life.

Combine all of that with the limitations of social media — where people typically get only a snapshot of our lives from a photo or secondslong reel — and it’s not surprising that most people can’t understand how we can feel so sick and yet look, in their words, “fine.”

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I’ve been told “But you don’t look sick” more than I’d like to admit, but one scenario stands out to me. And while it turned into a teachable moment, it sure frustrated me while it was occurring.

Years ago in Fort Lauderdale, Florida, I was rushed to the emergency room with tingling in my face, drooping of my lip, and the feeling that I was just off. Turns out I was having a small stroke. At that point I’d lived with lupus for almost two decades, and the sun and heat were my biggest triggers — making me extremely pale. I still am. I haven’t been out in the sun for longer than five minutes for almost 20 years.

I was taken back to a room, where I spoke with the nurse and waited for the emergency room physician to examine me. When he arrived, he took one look at me and said, “Well, I can already tell you what your problem is! You need some sun. You look sickly.”

Mic drop.

I’m not sure who was in more shock, me or my husband. Our mouths opened, followed by a horrified gasping sound. Then, out came the feisty New York Italian. Without even thinking, I barked, “Sir, if you read my file, you would know that I have lupus. I can’t be in the sun.”

People just don’t understand

Through later conversation with this doctor, I learned he didn’t know how badly the sun can trigger symptoms in people with lupus. And I learned not to expect everyone to be well-versed on my illness.

Over the years, I’ve also learned that those without a chronic illness don’t understand a lot when it comes to our triggers and health issues. I get their point of view; they aren’t living with our daily challenges, nor our years of medical issues.

So today, when I get those “but you don’t look sick” comments, I try to gently advocate and create awareness for those with my disease. Don’t get me wrong; this phrase can still sting and minimize what we deal with daily. But since we’ll likely hear it again and again, we should decide ahead of time on our responses — depending on the situation, of course.

I often tell people, “I appreciate what was likely meant as a compliment, but I’d be happy to share what I experience daily when you’re interested in learning more.” I try to speak it in a neutral tone, as that usually opens the door for dialogue.

Of course, sometimes the dreaded phrase is said in a judgmental and rude manner and people don’t want to know more. Those instances show me who belongs in my life and who doesn’t.

Sometimes, though, the phrase is said because the speaker isn’t quite sure what to say, perhaps because illness makes them uncomfortable. My advice for such occasions is to have a firm yet loving response in your own words that can open the door for education and communication. Only through such responses can we hope that this phrase sees its way out. Forever.

What’s your response to “But you don’t look sick”? Please share it in the comments below.

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.