My husband and I were at the store and a woman, a DISCERNING woman, commented on my decorated sling. My husband said proudly, “She’s wearing a sling because she just had a pacemaker implanted!” I know he’s doing everything in his power to make this a positive experience. This made me reflect on the difference between “getting fibromyalgia” and “getting a pacemaker.
The major differences between people’s reactions:
Having a Pacemaker:
How are you feeling?
Here, let me do that for you”,
“Don’t over exert yourself”
“It’s ok that you are sleeping all the time, your body needs rest to heal.”
“You are going to feel so much better as a result of this”
“Isn’t technology wonderful!”
“My Uncle (Aunt, friend, Father, co-worker) has had a pacemaker for 59 years”
Having Fibromyalgia:
(I don’t dare ask how she’s feeling because she’ll tell me),
“Do as much as you can because it’s not good to be sedentary.”
“It’s been over a decade since you were diagnosed and you are STILL sleeping all the time!”
(“I think it’s Mid-life crisis or psychosomatic hysteria”)
“Just quit focusing on it”
“You never want to do anything or go anywhere anymore.”
“You look Fine”
“Is it contagious?”
AND No one has ever said: “I know you’ll do well with your fibromyalgia”
In retrospect I should have gotten a pacemaker at least a decade ago!
There’s no understanding of people’s perceptions, is there my friend. Until one lives it one doesn’t ever know what it’s like to travel in another’s shoes and I know what it feels like to have shingles. You said that the pain is like that or worse; I can’t believe you were able to get up and go to work everyday with that kind of pain.
You are a brave human being who has give so much to others, even while suffering like that. I admire you and appreciate you.
Brooke