Tuesday, January 15, 2013

Evidently MS makes you look fabulous...

Buckle up...
  • But you look so good!  
  • You don't even look sick!
  • You wouldn't know it by looking at you!
  • You don't look sick... (said with a tone of doubt)
  • Are you sure you're sick? You look fine.
These are all things that people have said to me over the past 9 months- since I started getting tested.  People including medical personnel.  It is one of the things that bugs me and others with MS the most, though we never say anything.  Some people, I know, mean well and just might not know what to say.  Others say their comments with disbelieving tones.  Their comments say that because I don't look "sick", I should feel fine.  I should feel "normal."  I shouldn't have the symptoms I am having, or the pain I am having.  Evidently, all diseases and illnesses are supposed to make you look like death warmed over.  And if you don't look like you have been run over by a car, then you really have whatever illness you are complaining of.  Color me confused.  I guess I missed in the literature where it said that MS gives you boils and blotches and makes it look like your skin is melting off your body.

I am here to tell you now, that unless I, or any other person feel like absolute poo and haven't slept or are in the middle of an exacerbation or something similar, you can't tell just by looking at us that we are sick. Also, just because we look like we usually look, it doesn't mean that we feel good or that we are not telling the truth when we tell you what is wrong on the inside.  Another little secret, even the "You don't even look sick!" and "But you look so good!" actually comes across as kind of an insult  It is kind of like they expect us to look bad to prove that we are sick.  Or they want us to look as bad as we feel to make them feel better about themselves.  It almost always comes across as one of those backhanded compliments.  Either 1. By looking good, they think we are lying and there is nothing wrong with us, or 2. They totally were hoping OR expecting us to look bad...  We always smile and say, "Thank you," and are gracious, but anybody with a disease like MS will tell you that we are saying in our head, "Next time I'll try harder to look sick, just for you!" or something similar.  This does NOT include the friends that you see and exchange the usual pleasantries with who tell us that we are looking great.  Or comments about recent weight loss or a haircut looking great.  Normal conversations that everyone has are not included.  But those little, "You don't even look sick!"  Sorry!  I must have missed the memo on how I was supposed to look!

Just treat us like you would normally treat us, and don't mention with shock or disbelief how good we may look right after asking us how we are feeling.  When in doubt and you must say something about how we look... "Well, you look great!"  No snideness, no disbelief, no insulting tone.

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