Michael J. Fox became a “one of a kind” type of guy because he stepped forward, and let the world know about his disease. He gained national attention, and received national compassion and sympathy because of his plight with disease. I applaud him for his courage to “take a stand” and bring awareness to a disease, and to get attention for Parkinson’s and much needed research. But, he is a celebrity, and his job was fairly easy.
What about Jim? Jim has fibromyalgia. He is not famous, and not many people will know anything about the disease he struggles with on a day-to-day basis. Jim lives in constant pain, he fears losing his wife because he is no longer capable of “being a man.” He fears his grandchildren fading away from him, because “Grandpa” can’t do “Grandpa” things any more. His friends don’t call anymore because he has been “sick” one time too many.
What about Chuck? Chuck has Fibro. He is not famous, and not many people will know of his disease either. Chuck’s wife has already left him. His doctors still think it is all in his head, and there is really nothing wrong with him. He suffered from a car accident, and as a result he ended up with a diagnosis of fibromyalgia. The “invisible disease.” One of his doctors treats him like he is nothing more than a drug addict just wanting drugs. Yes, he does want drugs. He wants treatment for his chronic pain.
What about Dave? Dave has fibromyalgia too. Dave is one of those that people will never know he has fibromyalgia. Dave has trouble showing his pain, his feelings, and is afraid people will shun him because of his disease. He is afraid to let anyone know he is suffering. Dave is known to do things, to go overboard, and end up in bed for days, just to keep anyone from knowing he is in pain. Dave has a lot of anger, a lot of frustration, and a lot of pain.
What about Joe? Joe suffers from fibromyalgia. Joe is a trooper when it comes to his pain and disease. He never gives up, encourages others with the disease, and rarely displays a bad attitude. He has his good days, and his bad days, but is ever hopeful for a cure some day. He has a supportive spouse, and a close-knit family. He did however, lose his job due to the disease, and had to go on disability. Joe is active in his local support group, and is known to help others cope with the disease. Joe is the kind of person you would like to know even if you didn’t have fibromyalgia.
What about Greg? Greg has fibromyalgia. His is so severe he is confined to a wheelchair, and rarely gets out of his home. He has very little quality life, and not much to look forward to anymore, just the chronic pain. He suffers now from panic attacks, from irritable bowel syndrome, chronic sleeping disorders, shortness of breath, and several other “cousins” of fibromyalgia. He depends on others to help him on a day-to-day basis. Most of his friends are on the internet, and talk to him from afar, only when he feels up to getting on the computer and chatting.
What about Bill? Bill has fibromyalgia. Bill is still trying to work and hold down a full time job. He is starting to have to call in sick more and more. His boss is putting more and more pressure on him to be on time, and not to call in sick. He really can’t help it, as there are days when he just cannot work. His medical bills are mounting, his financial condition is falling, and his family is starting to suffer from his illness. His doctor says he needs to reduce the amount of stress, as stress makes Fibro worse. On his way out of the doctors’ office, the receptionist tells him they need a payment. This is a vicious circle. His medication bills are growing daily, along with other financial burdens.
You have just been introduced to a few of the men who frequent the menwithfibro.com website. The names have been changed, but they are all there. There isn’t much on the Internet about men dealing with fibromyalgia, and that was the reason http://www.menwithfibro.com/ began. It began as a central point for men to come, to share, to learn, and to grow with the disease. Traditionally, more women have the disease than men, but the number of men with fibromyalgia is growing steadily. Part of the reason more men are not diagnosed is that men are just plain stubborn sometimes. And when it comes to going to the doctor, they are VERY stubborn as a general rule.
Men are raised to believe that men don’t cry. They are told to “shake it off” and to “take it like a man.” Men fix things, men are the hunters, men are supposed to be the breadwinners, the head of the household. Men are inundated with these concepts from a very early age. Showing pain is showing weakness to so many men with chronic pain conditions. Fibro does not shake off. Fibromyalgia does not give up. It does not stop for anyone, or anything.
Hopefully the http://www.menwithfibro.com/ website will be stomping grounds for some of the men with fibro, and for women as well. The site is not just for men, but devoted primarily to men and how they choose to deal with fibromyalgia. Anyone is welcome to the site.
The site has a forum and the response there has been well received. Dr. Michael McNett from the Paragon Clinic in Chicago hosts one of the forums and discusses fibromyalgia openly. He has been a great asset and has been well received by all of the people coming to the sites. There is also a chat program available on the site.
The response to the website has been very good. Many say it is something that has been needed for a long time. Maybe it will be like a “Cheers” on the internet a stopping place for men and women to grow as individuals, and share one with another. That is our goal and hope.