She Doesn't Look Ill & Other Misconceptions

Recently, I asked some friends for blog topic suggestions.  I've gotten some great ideas, but I thought I would start with misconceptions, because it came up, in various forms, several times from lots of different people.  I think autoimmunity, compared to other kinds of illness, is exceptionally full of misconceptions.  Undeniably, this is because it is not yet well understood by the medical community, mainstream or otherwise.

I also think it is due to what autoimmunity "looks like."  In general, at least until late stages, autoimmune disorders don't necessarily make a person look all that sick.  Even autoimmune disorders affecting the skin . . . we may see the person has some sort of condition or that they may be uncomfortable, but we don't automatically think, "He's sick."  A really clear example is someone fighting cancer.  We can usually see that he or she is battling a serious form of illness and everyone understands what that battle will mean in terms of rest, medical attention, nutritional needs, emotional support and work-related output.

 

On the other hand, here's an example of autoimmunity.  That is a picture of me with my daughter, a few days after I got out of the hospital in Belgium, following my Celiac Crisis.  I am still very, very sick in that picture, but from the looks of it everything is fine.  You can't even tell how much weight I've lost, thanks to the big vest.  (After this picture, I got progressively so debilitated that I really didn't allow any pictures to be taken of me for the next eight or so months.)  Autoimmunity doesn't "look" ill.

When people did notice that something was wrong, they almost always commented on my weight first.  The misconception being that I had an eating disorder.  Not every Celiac experiences dramatic weight loss as a result of the disease (in fact it is another misconception that if you are heavy you can't have Celiac), but for those of us that do, fighting the "skinny=eating disorder" perception can be tough (there's also a misconception that thin=healthy, I've found this misconception to be the hardest to fight in the medical community).  Sometimes people were actually a little hostile, other times they were well-meaning but came off rude, and sometimes they were just blunt . . . I can't tell you how many times I heard the phrase, "You need a sandwich."  Even doctors seemed to think eating more of everything was the right answer for me.  I've had people insinuate that I'd had a breast reduction (for a woman fat loss that gets serious usually means smaller breasts).  The concern of family members usually just succeeded in making 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.  Autoimmunity doesn't "look" ill.

Then there was the "just snap out of it" talk.  I've had a life with some pretty high on the stress 'o meter events, but now I realize that the longer I went undiagnosed, 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, long-time friends recently told me that for years they thought that perhaps the multitude of situational stress events was what was causing my weight loss and anxiety.  To be honest, I often berated myself and thought the same.  Turns out a proper diagnosis, changing my diet, and supplementing to deal with the mineral and vitamin loss have been totally transformative to my level of anxiety, depression, and stress management skills.  But I heard literally thousands of times, from many people, "Just calm down" or "stop being sad" or "you just need to push through this."  At the very end, when I could no longer walk very far, stand very long, tolerate heat or cold, and wanted to sleep almost all the time, I would hear, "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" . . . I was ill.  Autoimmunity doesn't "look" ill.

And last, but not least, 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.  I got colds and sinus infections all the time.  When my skin condition was at it's worst I found myself unable to think about anything else.  The pain filled up my whole brain.  I complained about my pain often, but for every minute of moaning, there were weeks of silently enduring it.  "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.  Autoimmunity 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.