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.
8 Comments
I know how you feel honey. I have been dealing with this my entire life… over 18 years and most people still just really don’t get it. My husband and I have been together since I was 14… we will be together for 13 years in November and he’s honestly just over the last few years gotten to where he researches and tries to figure out where my pain is and what my triggers are and what he can do (or not do) and has become more sensitive to how serious it can be.
Before, it was like I would say I was hurting and no one would hear me. It sucked. The thing is, now that he tries to support me and understand, I’ve gotten so used to suffering in silence that I don’t mention it until it gets to the point that I can’t hide the tears anymore. It frustrates him that I don’t lean on him but that ship kinda already sailed, you know? I’m sure with time I’ll get used to him wanting me to involve him, but I’m used to dealing with it on my own so I just do.
Fibromyalgia SUCKS. And it’s not just the pain. It’s everything. It’s remembering things. It’s concentrating on things. It’s my blurred vision. It’s the blindingly nauseating headaches. It’s the fatigue. It’s the sleeplessness. It’s the frustration. It’s the confusion. It’s the depressing feelings of helplessness. It’s everything. And no one gets it… hugs
.-= Kat @ For the Love of Chaos´s last blog ..Help Me Get to the American Idol Auditions- =-.
I understand where you are coming from. When I was diagnosed, no one understood what I was going through. I don’t even discuss it with anyone, unless asked.
.-= Tammy´s last blog ..Colton Harris-Moore The Barefoot Bandit Arrested =-.
I’ve been forwarding your posts to my sister. She is only 20 years old and has chronic pain. Neck damage that gives her a n intense chronic headache every single day. She’s had it for 5 years now, docs can’t do anything about it. Her friends don’t understand, they think “How can someone have a headache EVERY DAY”. But until you’ve loved and known someone with chronic pain…you truly can never understand. I see her struggle daily, and it hurts me so badly. It’s helpful to know that others out there have pain and are doing their hardest to survive day to say just like she is. Your posts mean a lot, thank you so much for posting!
I don’t know you, other than following your blog, but I wanted to say I’m sorry you’re having to deal with all of this–the physical pain and difficulties along with the social and family repercussions. It must be incredibly difficult. I truly wish God’s blessings on you.
Gosh, I’m so sorry Jenna. I don’t know much about it but my hope is that someone will find something that helps people with Fibromyalgia. {hugs}
My niece has it and has days that she can’t sleep in a row. I wish there was a cure or something I could do for those that have it. Huge hugs. I wish I could be there for you
.-= Paula´s last blog ..Menu Monday 7-12-7-18 =-.
As a chronic and constant pain sufferer for close to 13 years now, all I can say is I totally have empathy for you.
The pain can leave you feeling zombie fatigued especially when you go nights on end without sleeping.
That of course jacks up your remembering things, gives you nauseating headaches, confusion, and who wouldn’t have a short fuse or be frustrated after all of that.
I have just gotten to the point of not letting people judge me. If they say why not to something they want me to do and I can’t because the pain or fatigue is too much, I just now am no longer nice, I simply say, “Hey when you live with this for over ten years you will so have the right to judge me or question me, but until then zip it.”
I’m sorry, Jenna. It does suck when no one gets it. I’ve been blessed with a husband who really pitches in and helps when and where I need him to. Not that we both didn’t struggle with the dx at first, but we have a system now. My family never got it until recently. I was dx’d at 21. They couldn’t understand why when I was so young that I was so tired, had headaches almost every day, and I hurt all the time. Well, now my sister (who still lives at home), was in a car accident, and had chronic back pain from it. I don’t wish that on anyone, and I’m sorry that’s what it took for my family to understand what I go through and have been going through the last 8 years.
.-= Amanda´s last blog ..The PX and Commissary =-.