I never knew you were sick....

How many of us have heard that?  If you have a chronic illness, a genetic anomaly, then you've probably heard it at least once.  I never know how to reply.  Should I feel defensive?  Should I try to explain how I was born with EDS but wasn't symptomatic?  I try to be honest about these things so that people learn from it.  There is no easy or right answer to this comment.

See, Ehlers-Danlos is part of me.  Its in the very cells of my body.  Its in my genetic makeup.  As a kid, I wasn't sick.  But I was bendy.  No, I was freakishly double jointed.  I could bend in all kinds of neat ways.  I was also horribly clumsy.  I ran funny and remember kids laughing about it.  When I was in elementary school, gym class was torture for me.  Our gym teacher was athletic and insisted that we tumble, roll, somersault and cartwheel our way around the gym.  I couldn't.  Some bendy people make great gymnasts but not me.  My body doesn't hold together and move the right way and I could never do it.  Poor Mr. Lunsford could never understand.  I know that he thought I wasn't putting in effort.  I wish that now I could go back and tell him the truth of it.

I had horrible headaches all of my life but we didn't know that was anything more than just that.  Headaches.  They called them migraines.  They blamed them on inheritance (my dad has them).  They put me in glasses for the mild farsightedness and astigmatism and said it would help.  That's all that anyone did for headaches when I was a kid.

When I was a teenager I began experiencing hypoglycemia.  My blood sugar would drop severely.  I didn't eat too well so I'm sure that contributed but much, much later in life I learned that I my adrenal glands don't work correctly and low blood sugar is one of the signs of that.  We didn't know all of this, then.  I remember a doctor telling me once that its just low blood sugar.  When I feel it coming on to eat a protein and carb combo snack. He also told me that it would switch and become diabetes later in life.  He was wrong.

As I moved through my 20's, I started to become more symptomatic, lived with more pain.  I wasn't diagnosed with EDS until my mid-30's, after my daughter.

So, yeah, many people had no idea that anything was wrong with me, including me!  But, it was.  I was born this way, as were most of my children.  We may look normal, we may act normal sometimes.  That's why they call so many chronic disorders an "invisible illness".