When No One Thinks You 'Look' Ill

Autoimmune disease, compared to other kinds of illness, is remarkably full of misconceptions because it is not yet well understood by the medical community, mainstream or otherwise. The misconceptions are also due to what autoimmunity “looks like.” Until late stages, autoimmune disease doesn’t necessarily make a person look all that different. I have celiac disease, but my damaged small intestine wasn’t visible to anyone else. The mounting nutritional deficiencies were leading to slow weight loss, daily panic attacks and bone crushing pain, while on the outside I looked like the perfect package of health.

A person with cancer may have a different experience with illness and others’ perceptions. People might better understand what that will mean in terms of rest, medical attention, nutritional needs, emotional support and work-related output. Hearing, “Uncle Joe was diagnosed with leukemia” could means something different to a support network than, “Amy was diagnosed with Hashimoto’s disease.”

This is a photograph of me with my daughter, taken during my celiac crisis. Although I look like I’m just sightseeing with my family, under that big vest I was concealing my lowest body weight and I’d just spent four days on IVs in a foreign hospital. I was drained of energy in a way I almost cannot describe. This sightseeing trip was sheer force of will to try and normalize my scary hospitalization for my daughter. After this picture, I got so debilitated that I didn’t allow any pictures to be taken of me for the next eight months. I felt terrible and didn’t want that documented. Autoimmune disease doesn’t “look” ill.

The only thing people eventually noticed changing was my weight, the misconception being that I had an eating disorder. Not every celiac experiences dramatic weight loss as a result of the disease (that’s another misconception), but for those of us that do, fighting the “skinny equals eating disorder” perception can be tough. Sometimes the comments were a little hostile, other times they were well-meaning but rude, and sometimes they were just blunt… like the frequently heard phrase, “You need a sandwich.” The concern of family members usually just made me feel even more self-conscious of a problem I did not understand or have a name for (yet).  Nobody ever asked me how I was feeling, they just made assumptions about why I was so thin. Autoimmune disease doesn’t “look” ill.

Then there was the “just snap out of it” talk. Life can be stressful, and I didn’t realize the longer I went undiagnosed and the more malnourished I became, the less capable I was of effectively managing stress. With the inability to cope well with stress, I also had increasingly serious anxiety and depression. Two close, longtime friends told me that for years they thought stress alone was causing my weight loss and anxiety. To be honest, I often berated myself and thought the same. I heard literally thousands of times, from many people, “Just calm down” or “Stop being sad” or “You just need to push through this.” Even at the very end, when I could no longer walk very far, stand very long, tolerate heat or cold, and wanted to sleep all the time, I still heard, “Just snap out of it” or “You need to pull yourself together.” It turns out there was nothing to willpower myself through, nothing to “snap out of.” Autoimmune disease doesn’t “look” ill.

And last, but not least, was how much pain I was in. Almost nobody understood. I had pain through my rib cage that was overpowering. I had pain and numbness in my legs. My joints hurt. My stomach hurt. Sometimes I was so tender, I literally could not bear to be touched, even lightly. Sometimes it was so intolerable I could not sleep, sometimes it was so intolerable all I could do was sleep. When my pain was at its worst I found myself unable to think about anything else. It filled up my whole brain. I complained about it often, but for every minute of moaning, there were weeks of silently enduring the pain. “She’s a hypochondriac.” “Will she ever stop whining?” “She likes to complain.” All of it is gone now. I just needed a name for what I was fighting and a way to fight it. Autoimmune disease doesn’t “look” ill.

This experience has completely altered how I think of people who are very thin, very heavy, very depressed, very anxious or very often in some kind of pain. I now realize that what I see and what is, may be two different things. I think, “Maybe they are ill? Maybe they are hurting? Maybe something is wrong?” That person who looks just fine and I wish would just pull it together might be terribly sick, in a struggle nearly as intense as a battle with cancer, but without a name for the enemy or ways to measure who is winning. Looks can be deceiving.

Follow this journey on Autoimmune Paleo.

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