Hey! No Piling On!

Dear John,

 

I get to be annoying for a whole week! What fun! And it requires very little effort - I seem to have a gift for it.

 

Today is the beginning of Invisible Illness Awareness Week. I've come out of the closet about the fibromyalgia - I had to, since you're not here and I don't have anybody to lateral to. But on this week and the week of Fibromyalgia Awareness Day in May, I get assertive. I take the opportunity to educate all my Facebook friends, whether they like it or not.

 

Invisible illnesses still carry such a stigma. I get tired of being dismissed - "Oh, it can't be that bad," or "You just need to get out more," or "I heard that fibromyalgia is all in your head," or the one that I hate most, "Everybody gets tired and has aches and pains; you just need to deal with it like the rest of us." That one can make me homicidal.

 

Do people really think that fibromites don't know what normal fatigue and aches feel like? Do they think we want this kind of life? The essence of this question is, "Do they think?" Somebody asked me today what fibro feels like, and I told them the best description I can think of. Imagine having the muscle pain of your worst case of the flu, and the exhaustion of mono, and you feel that way every day for the rest of your life, with no treatment and no cure, and 20% of the people you know tell you that nothing is wrong with you. There are reasons for the statistics: 75% of us are divorced within 2 years of diagnosis, and our leading cause of death is suicide. This is serious, people!

 

Pardon my rant. And thank you for listening to this same rant for years, and always managing to be sympathetic. Thank you for not divorcing me for having fibro. I know it was unthinkable for you, but 3 out of 4 men in your position do.

 

I am greatly blessed. My husband, in-laws, priest, and closest friends believe every word. And that's all I want. I don't want sympathy. I don't want understanding, because you can't understand unless you're there. I want to be believed. I want people to respect the choices I have to make and the limits I have to keep. I want people to be open to education. I love it when somebody doesn't think they know more about the disease than I do because they read an article on the Internet. I want respect. That's the crux of it. I have a chronic, invisible illness - and I want to be respected anyway.

 

I guess that's what Invisible Awareness Week and education are all about. They're about respecting instead of judging. I judge and condemn and hate myself enough - don't pile on!

 

So, why no fibromyalgia picture today, you ask? Because this is the way we all feel when we're not respected and believed. Want to pile on? I know - let's go for a quiet walk in the woods! It will be very relaxing!

 

Thank you for putting up with me, being kind to me, never divorcing me, and managing to still love me.

 

Adore you,

Joan.