No, I Can’t Do That!

Sure, I’m tired.  I have fibromyalgia; I’m always tired.  It’s part of the diagnosis.  I don’t mean that I’m tired in the sense that I stayed up too late watching TV or going to a bar.  Nor do I mean that I’m tired because I had to sit in a chair holding my infant upright all night so he wouldn’t scream.  When I’m really tired, there could be a train careening towards the house, and I couldn’t get out of bed.  I’m a little step up from that at the moment, but I’ll reach that stage before the day is out.

What I’m really tired of, though, is explaining this to people.  My husband talked about this over the weekend.  He’s sick of trying to explain my condition to friends and co-workers.  I’m not referring to meeting a new person who’s curious about why I never shake hands.  (I don’t because many days this will lead to my screaming in pain which is not the best way to meet new people.)  This is about people we’ve known for a long time.

I’ve been too sick to work outside the home for seven years now.  I even managed to qualify for disability.  Of course I don’t look particularly sick, and that doesn’t help.  People constantly tell me how good I look.  I think some of them mean well, but I’ve found that for many people, it’s a way of minimizing my illness.  I couldn’t possibly be too sick to teach Sunday school when I look this good, right?  And if the weather’s turned foul, surely I could hop out of bed to pick my husband up from work to save him a ride home on his scooter.  No amount of explaining gets the point across.  And never mind that storms increase my pain, increase my exhaustion, and make my mind more fuzzy than usual.  Isn’t that the description of someone you want out driving?  Surely, if I really tried, I could get up and do these things.

I used to believe that I could make myself do things when I wanted to badly enough.  That’s probably why I didn’t stop working until I couldn’t get out of bed.  I spent my first week of disability unable to reach the bathroom without my husband’s help.  It was a major achievement when I could walk down seven steps in our split level and reach the living room.  I couldn’t handle driving a car at all for the first 18 months I was sick.  I still have days when it takes me an hour or two just to stand up and stumble down the hall to the bathroom.  I still collapse at horribly inconvenient times when someone needs my help or I have a rare opportunity to do something fun.

I don’t like any of this; I hate it at times.  But it is what it is.  And I’m sick and tired of trying to convince other people that my limitations are real.  I didn’t suddenly turn lazy and decide to stop working.  My problems aren’t going to be fixed through therapy because I have something physically wrong with me.  It’s real.  It doesn’t matter if you believe it, and I’m out of patience trying to get “friends” to believe this is real.  You either believe me or you think I’m making stuff up.  Everyone who thinks I’m making things up should now leave the building; I have too little energy to spend trying to convince you.