He Said, “But You Look Fine.” What I Wish I Had Said


“But he said you looked fine.”  In 2011, I was hospitalized after being very sick for a long time. Concerned friends visited with their well wishes. One of my friends could not come because she was sick herself and instead, sent her boyfriend, who happened to be in the medical field and knew “all about lupus.”

Apparently, he reported to her that I looked fine. I still think about that. I think about how when he visited, I must have looked fine.

Before his visit, however, I had been deliriously ill and comatose for a few days. During his visit, I gathered enough strength to converse and even laugh with him. At the same time, though, I was feeling such intense chest pain that I could not even lie down for relief. Thanks to my high fever and chills, I felt like I was burning naked on top of a freezing iceberg in Antarctica. My headache was so intense that I started to think a drill through my head might relieve the pressure. Every movement made me feel faint, and I constantly felt like vomiting. My eyes were bulged, and the hospital lights felt too bright. My ears were ringing so loudly that conversational tones sounded like yelling.

I was hungry, too. But, my entire mouth was covered with sores, my taste buds were shot, my teeth and gums were sensitive, and the skin inside my mouth felt like it was missing a layer, so I had been unable to eat. My entire body felt like a bunch of guys were continuously beating me up, and the painkillers I took seemed to wear off within 10 minutes. My stomach was hurting, my digestive system was out of whack and I was suffering from heartburn, gas and diarrhea. I was numb from the waist down and the only feeling I had down there were feelings of pain.

Despite all of this, I looked just fine.

I hope that with awareness, people will understand that a lupie could be sitting across from you, looking fine but feeling sicker than one could imagine. If you have a lupie in your life, the next time you see him/her, instead of saying “You look so great!” try asking “How is the pain today?”

Learn more about lupus with The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families and find out about easy and delicious Lupus friendly recipes on Beat Lupus Naturally: 49 easy and delicious Lupus friendly recipes

Note: PLEASE consult with  your doctor before making any changes to your diet or medications. The material on this site is provided for educational purposes only, and is not to be used for medical advice, diagnosis or treatment.

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4 thoughts on “He Said, “But You Look Fine.” What I Wish I Had Said

  1. Fabienne

    So glad you name this nonsense! I hear this all the time, for myself and our members!
    Yes, it is such an invisible disease! And people need to know about it. So thank you for name it for all of us!

  2. Kat

    When people start calling referring to themselves as their
    illness, as in “I’m a lupie”, or a “spoonie” it makes me cringe!
    I am then convinced they may never get better! When I first developed Lupus, I
    tried going to support groups BUT I most found people whose identity was fused
    with having the disease. It was mostly commiserating… When I told them about
    something I was using that was actually reversing the progression of the
    disease (LDN), if anything they were mostly either disinterested or punitive
    about me giving “false hope”. Meanwhile, they were planning a “walk
    for the cure” and their next potluck. Just think about it before feeling insulted..we are on the same side…

  3. esthersiebert

    Maybe a good response to “but you look good” would be: “Unfortunately for many invisible diseases including mine, how I look has nothing to do with how sick I feel. I wish it did.”