Fibromyalgia & Those Stinging Comments Made by Others

Author: Cynthia Webber

What's wrong with you? Could you pronounce that word again? Oh, I had fibromyalgia, but I "cured" myself with this product. So, what's the big deal about fibromyalgia? Everyone has aches and pain. Boy, do I have pain! My back and neck are always hurting. It's no big deal.

So, what? Everyone gets tired. Try going to bed earlier. You'd feel much better if you'd just exercise and eat the right foods. You're depressed? Try this herb. It "cured" me. You'd feel better if you'd quit taking all those medications. I have a friend who had fibromyalgia and she/he uses this product. Sure, it's expensive, but it's worth it.

Forget about it, and it will go away. You want to know what your problem is? You have childhood issues that you haven't resolved. You need to see a counsellor. You just need to pray. God will heal you. I'll pray for you.

You have too much stress in your life. Try relaxing. Maybe you need a vacation. Just keep busy and you'll feel better about yourself. Fibro Fog? That's just old age. Just be thankful for what you have.

If you didn't spend so much time sitting in front of the computer, you'd feel much better. Try Tai Chi. Try karate. Try massage. Try acupuncture. Try meditation. Try this product. Go swimming. Walk every day. Quit smoking. Quit drinking coffee and soft drinks, quit eating chocolate. Quit eating meat.

Just tell your family and kids to do all the housework. Get a housekeeper. Try reading this book. You don't need disability. You look fine to me. You have a handicap parking permit? What for? You're not handicapped! Think about all the people who are worse off than you. That will make you feel better. You spend too much time dwelling on yourself. Get out and help someone else.

How many of these statements have those of us with fibromyalgia heard? Maybe not all of them, and maybe some of us have been told other things. These words hurt. They sting, and they do not validate us for having a condition which has no known cause and no known cure. Remissions can occur, and sometimes these are spontaneous or sometimes it is the combination of medications and things that we are doing in our lives which make a difference. But if someone tells me that they've been "cured", I very assertively tell them that they either didn't have a proper diagnosis of fibromyalgia in the first place, or they are in a remission. There is nothing wrong with having a remission. People with Cancer have remissions, and there is no known cause for Cancer. People with diabetes require insulin, or oral medication, or diet changes, but there is no known cause for diabetes.

Remissions do occur, and sometimes they may last long enough for someone to feel that they have been "cured", but a cure means that it will never come back. Cancer comes back, and diabetes has other complications which can be either life threatening or more disabling. The point to remember is that if a remission of fibromyalgia does occur, enjoy it. However, don't tell other people who are suffering with the pain, fatigue, or other symptoms of fibromyalgia how to "cure" themselves.

With fibromyalgia, each person is unique in how they react to medications and other treatments. Exercise for one person may mean swimming daily or walking for an hour easily, while for another person, just walking for 10 minutes is extremely painful and fatiguing. Cancer of the breast is different than Cancer of the Pancreas, and an insulin dependent diabetic is different than a diabetic who only needs to modify their diet.

What works for one person, may not work for another, and sometimes even our medications or other treatments stop working. There is little that we can do when this happens except to see our physicians and try something different to see if that will help.

Learning to live with fibromyalgia is not easy, and people around us can make it even more difficult with their lack of understanding, or inability to see us as we really are. Even those of us with fibromyalgia judge others by making comparisons. Just because I'm able to walk without a cane, and can walk outside with my dogs on a regular basis doesn't mean that someone else with fibromyalgia can do the same amount of walking that I do. When I'm having a very bad day filled with total body pain and fatigue, the last thing that I want to be told is to go for a walk because it will make me feel better.

We need to read and learn as much as we can about fibromyalgia, and it must be from reliable sources. We also need to learn to listen to our own bodies, our own feelings, and to do what we know is right for us. Getting angry, feeling hopeless and depressed, or just giving up and lying in bed, expecting others to understand and take care of us just won't work. People can not see our pain and fatigue unless they really look at us and take the time to see the slight differences in our faces, our ability to move, or even our emotional state.

Becoming assertive with our doctors, family members, friends, and even with those who also have fibromyalgia is one thing that we all can learn. It is tiring to have to constantly be making changes in the way we view our lives, but small steps can be taken each day. Learning to set boundaries around ourselves is very important for our physical, emotional, and spiritual well- being. Learning to say, "No" and setting aside time without disturbances is very important. For example, I try to set aside time in the morning in order to write, think, or read a particular book that I may find helpful to me. I can become overwhelmed by the phone ringing during this time, or being disturbed by my family or friends online. I will not answer the phone, or I turn the sound off in my room, and put the answering machine on if there is no one at home to screen calls for me. I do not always respond to messages in ICQ, and will set it for invisible in order to be undisturbed. At times, I set my ICQ to be visible to certain online friends, but when I want complete privacy, I will actually turn it off.

There are 100's of books that encourage people to take responsibility for their own lives and happiness. These books are for the general public, but those of us with fibromyalgia can learn from some of the books that are on the market. We must learn to be selective in which books we choose to read or purchase. Just because I may recommend a particular book doesn't mean that it ould be helpful to another person. The FMS Book Store [1]is a good place to start searching for books on fibromyalgia, and Amazon Books[2] is another place to search for other types of books. Reviews of the books are available on site, and this is an easy way to find a particular book that may be helpful. Once a book is found that sounds like it may be helpful, a trip to a library or book store is usually less costly than ordering a book online, but for some of us, it is much easier to order online.

The important thing to remember is that each one of us is unique and different in not only our fibromyalgia, but also in how we deal with our symptoms, life, our limitations, and other people.