…at least, for me.
I could write several paragraphs about my symptoms: The almost never-ending pain, the exhaustion, the migraines, the insomnia… you get the idea.
But the pain is not the worst thing. The worst thing is that Fibromyalgia is hard for me to talk about.
My friend, the writer W.H. Pugmire, sent me an email the other day. His emails never fail to lighten my mood, because it’s so obvious that he really cares. Anyway, one of the things he wrote was: I worry about your pain in this adventure of mortality. I think you suffer more than you allow us to realise.
That’s true. Maybe I’m wrong, but I feel there’s a danger in telling people how often I hurt. I don’t want my friends to dread speaking with me because they know I’m in pain and there’s nothing they can do about it. And I don’t want people to think of my illness when they think of me. I don’t want to be known for my illness.
I’d like to be known for my writing, I’d like to be known for trying to be a good friend. I’d like to be known for having a successful magazine, for being a good editor, father, and husband.
Any and all of the above and more… but I don’t want people to think of Fibromyalgia when they think of me. I don’t want them to remember that I am sick every day of my life.
I am not sure if I’m writing this for me, just to get it out (because I have to, I can’t hold it in any longer), or for other people who suffer from Fibromyalgia and other invisible illnesses, to remind them that they are not alone.
Looking over what I’ve written, I’m tempted to hit the delete key. After all, this is the first entry of this blog, and I thought I was going to write about something else. But I guess this is what spilled out, instead. And maybe it doesn’t make any sense at all… but I’ll leave it, and hope that it helps someone else who might be going through something similar.
I’m wrong, though: Fibro being hard to talk about isn’t the worst thing… it’s the second-worst thing. The worst is that my little boy told me the other day that sometimes he worries about me so much and keeps it inside for so long, and then the sadness bursts out of him. The worst thing is that I haven’t done a better job of keeping my pain from him, and I need to do better. He doesn’t deserve that burden. He’s only a little boy.
In the end, he and my wife are the ones who matter, more than anything. And I’m so grateful that I have them. I wouldn’t trade them for anything… and the positive thing about all of this is that I know — I know — they feel the same way.
So, really, I’m the luckiest man in the world.