Well folks we have a big problem. It is not a new one, and certainly not experienced by all. But given the nature of our illness, its ups and downs. The lilacs, mulberries and amethysts of Fibromyalgia, we have influenced popular opinion.
"How come you went to Sally's party last weekend when you didn't go to mine the week before?" "Why can't you join us for Thanksgiving? You were off visiting your friends just a few weeks ago!" "You just pick and choose to have Fibro when it is convenient for you." "You use Fibro as an excuse to not live your life. You won't work but went out to dinner last weekend."
Sadly many I have talked to have expressed the frustration of this sentiment. So let me get right to the point. When a person has a disabling illness they have to damn near live in a bubble to manage you bet your ass we pick and choose what to do with our "well" moments. We just don't have that many of them! Did it ever occur to the offended persons that you like Sally a whole lot more, and had an astronomically better time at her party than you would have had at theirs? Are they aware you did as close to nothing as possible for a week before and after to even make it to your friend's house out of town? Have they ever stopped to think you are still a person with hopes and dreams and desires even though you got sick? The basic tenants of your personality are being squashed by awful pain, but have never gone away? And you have as much of a right to snippets of happiness in your life as they have in theirs?
I was chatting with a couple of my Fibro friends not too long ago. One of them had been harshly criticized. She went to a party and danced the night away. The court of public opinion came blaring back at her in full judgment. She was accused of using Fibromyalgia as an excuse to only attend the activities she likes, and avoid the ones she does not. Rationalizing that because she danced she was clearly not that sick. Well the real story was in order to dance at this party she had to pump herself full of "pain dullers" and spent the week in bed after because of the pain. But dancing is her most favorite thing to do that brings her joy. She is an adult who is allowed to make her own choices and suffer the consequences as they come. To her, this was worth the cost. Another friend said something that brought this home so acutely it gave me shivers up my spine and made the hair on my arms stand on end. "Criticizing you for enjoying yourself is not love. You want to know what love is? Dance harder."
Thanks for joining,