“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?”
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Excellent. I have the same symptoms plus add utility times 5 in one year. I feel your pain and fever and fatigue. You are not alone. Robin
What gets to me is that family members such as sisters never say it in so many words, but suggest that I have brought it on myself by not living a healthy lifestyle. Bragging about their intense exercise regime while to me walking down my corridor of my house more than 10 times a day is a real challenge. Not due to laziness or overweight but because of pain and terribly stiff joints and lack of blood circulation. I hate to see how my disease underlines that no one really cares for others
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!
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…
Thanks for sharing your thoughts @esthersiebert:disqus !
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.”