I have become a member of an online Facebook group for fibromyalgia sufferers. I started exploring the different avenues for support for people with fibro. We don’t have a support group in the Philadelphia area that I could find. I wanted to be around other people who know what I am going through. I was hoping that I would feel less alone on those days that I am in pain and can’t leave the house. I also was hoping to learn what those women and men who deal with fibromyalgia on a day to day basis did to ease their symptoms. I was looking for comraderie, sisters in arms, people fighting a fight together. That isn’t really what I found, yet.
Sometimes these chats seem like only people who are suffering together. They are encouraging, sympathetic, and lovely. We are all suffering. The thing about fibro is that we’d have a pretty pitiful march if we were going to battle. Most of us can’t walk very far at all. Most of us are in constant pain and feel nauseous and feverish. We feel like we are hung over AND have the flu. It’s not like we can usually muster up a rallying cry. It would come out like a sigh more likely. But I am still looking for a way to cope.
I’m not ready to be couch bound. I want to walk for hours-down streets I’ve never seen. I want to be able to fly without pain. I want to be able to do yoga for an hour without taking a two day break to recover, because Philly has free yoga on the pier. To do yoga by the water would be a dream.
I am not ready to give up on those dreams. I need to continually feel like I can do it. I need to know in my brain that it is possible for these things to happen someday-even if it is not true. I need to be able to strive for it. If I believed that it wasn’t possible I would probably curl up in a ball and give up. I desperately and deeply need the motivation.
I guess I am looking for someone to say this is working for me, you can too. Isn’t that such bullshit? No one is going to give me a get well quick story. This isn’t that kind of syndrome. Fibro is forever. I get that. They say that you can live with it. What exactly that looks like isn’t really clear. From the testimonies on so many fibro sites it seems dreary and hopeless. Most of my fibro sisters have spouses that don’t care enough to find out about their wives’ condition so they complain about their inability to perform tasks, their inevitable weight gain and they belittle the pain they’re in. Most of them have kids who are ungrateful, and employers that could care less. It is a sea of harshness in a world of people who should be treated with kid gloves. These people are in pain constantly, who still have to perform their lives, AND try to figure out how to medicate themselves.
Think about your mother. Everyone in the world who had a good mom, think about that mom. What if she had fibromyalgia. She would have never had time to figure out how to make her life easier. Most moms don’t have time to get their nails done or catch their own movie, less known go to physical therapy or read a book on fibromyalgia. Fibromyalgia is predominantly a female syndrome so females are too busy building families and running the f*&Oing world to treat themselves to all the doctor’s appointments, or go to physical therapy twice a week, or a trigger therapy masseuse. I am extremely lucky; my partner is the most remarkable partner in the world. He is seriously amazing. Most women don’t have my privilege or my support.
I don’t work right now. It’s my turn to be at home because I worked while Brad went to school. So, I get to follow my dreams now. Part of that dream is to get healthy. I am working on that full time while also trying to get my writing going. It is unusual that any woman has the time I do to do the research, go to doctors and physical therapy, schedule workouts, meal plans, and supplements. Right now, I am extremely lucky for a fibromyalgia sufferer.
It is easy for me to have spunk. It is easier for me to get riled up, throw my fist in the air and say, “I will figure this out. I’m gonna live a good life!”
The big problem is that fibromyalgia has been around in some form since 1904 according to a government web site. They knew about it since then, but didn’t do an official study until 1981. The AMA didn’t recognize it until 1987. Do you think that it is a coincidence it took so long to get acknowledged on a disease that mostly affects women?
So, the medical community hasn’t done that great for these women. Most doctors don’t really give these patients a lot of options. I’ve been going to the doctors and physical therapists for over a year and it wasn’t until I picked up a book by Dr. Ginerva Liptan called The Fibromanual that I found out some information that is really helping me. No one else has explained the disease to me so clearly or why I need to do the things I do. Of course, The Fibromanual was written by a woman who also has fibromyalgia. That is how we get things done, right?
I’ve only been following her advice for two weeks and already I feel a little better. See these chats I have been observing on Facebook and other support group web sites only make me mad. It is another way that women are neglected in this society. I can forgive their partners for not knowing what fibromyalgia is, because I am still figuring it out and I am a dogged opponent even without a medical degree. I can forgive kids for being little ungrateful shits, because that’s what they are supposed to be, but I can not forgive doctors who get paid more than most of the population for not taking enough time to truly give these women relief. I recommend every doctor who has a general practice to read The Fibromanual and other books. Give the women who are sixty percent of the work force, and seventy percent of the home care, some attention please. Give them a fighting chance to get out of bed without pain.
To all my fellow sufferers,
I know your life is busy. I know sometimes this seems hopeless. It sucks. I feel it everyday. There is hope. Read up as much as you can and press your doctor to read up too. It is there job. Don’t let them get away with not knowing how to help you. That sucks. My first book recommendation is The Fibromanual. It even has a section you can hand your doctor. Know your body, and know that there is some relief out there. Try if you can to prioritize your health for a little while so that you can get a system down that will provide you with happy pain free days. Get help. The people that love you will realize you are worth the time you need to figure it out.