The Five Stages of Grief

If you were ever a medical or nursing student, or majored in any other subject that required a psychology class, then you've heard of the five stages of grief.  We are taught that these are the stages that we go through when we lose a loved one, when we face death.  However, we are not always taught that those who live with chronic disease also go through these phases.

What are the five stages of grief?  They are Denial, Anger, Bargaining, Depression and Acceptance.  We can go through them in any order, we can go through some stages more than once, we make take years to move on to the stage of acceptance.

I have so far moved through denial, anger and depression and acceptance.  I constantly deny my illness and disability.  When I hit this one hard I will usually try to work too much.  I will clean, scrub, cook horrific amounts of food, craft, shop, work outside, anything to deny that I am sick.  I'll go until I can't.  Until my heart won't let me.  Until my body begs me to stop.  Until my head is pounding.  And, for a few days after, I have a hard time going at all.  And then I get angry.  I'm mad at the doctors for not fixing me, for taking so long to diagnose me, whatever reason I can find.  I get mad at my family for not pitching in more, not listening, not taking me serious.  My poor husband bears the brunt of this stage.  Then, I'll often become depressed.  I become afraid of dying, upset about the things that I can't do.  I have to work on who I am again, find my value.  Then, for a few days I move into a stage of acceptance and am at peace with who I am and where I am.  And before long I change and it starts all over.

So, what I want you to know is that these feelings are normal.  If you are dealing with a terrible illness, if you've lost a family member, if you've been through a huge change in your life, then you'll go through these stages.  Recognizing them helps you to understand what you are feeling and why.  It helps bring a bit of perspective so that you can better live with it and maybe move on.

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".