Trying to understand a disease that very little is known about is hard enough. I often hear “feel better” or “get well soon” when it comes to me having a headache or expressing how bad my back hurts. The thing is, I never will “get better”. There is no cure. It’s like telling someone with an amputated arm, “Hey, I hope your arm grows back soon!”
I have very few friends that understand what I am going through. Some have attempted to do whatever they can to educate themselves, others? Well, they just don’t care. Several of those that don’t care are family members. The “doctor’s visits are hassles”, “You’re always at the doctor, Jenna” “You just need an antidepressant and painkiller”.
It makes life hard when it’s hard to find someone you can turn to. The friends I have online have been incredible and amazing. God sent in more ways then they will ever know. I have doctors telling me “Have someone help you press these points, have someone do this…try this.” but it’s hard when those closest are unwilling and it hurts. I’m told it’s all in my head. There’s no effort to learn or try and educate from those closest to me.
My husband, well I won’t even go there. I’m just a pain in the ass when it gets to the point I’m making an emergency room trip. Do you think I enjoy sitting for hours on end being poked and prodded all in hopes that maybe, just maybe, they’ll knock me out enough that I can finally sleep. If only the preventatives were taken so it wasn’t pushed to that level.
Friends have disappeared. Jenna’s no fun anymore. First she had kids, now she doesn’t even want to drink a bit with us. That or she cancels last minute. What about just coming and hanging out, enjoying a peaceful time at my apartment? Around my kids, playing a game or two? I promise they won’t bite.
What do you do when they’ve all turned their backs? Where do you go when you feel nothing but alone and as if you’re fighting alone? A quote I saw is perfect.
Fibromyalgia is real and does exist. Do not tell someone with fibromyalgia that it is all in their head. This is not only insulting but is insensitive and will damage your relationship.
You can only fake a smile for so long.