Words are amazing things. They have the power to heal and the power to cause permanent scars. Sometimes we are at a loss for words, so we say the wrong thing at the wrong time. Sometimes we are careless and say things without thinking about their impact. If you know or love someone with fibromyalgia, these are things best left unsaid when you are trying to be supportive.
"I know how you feel."You may say this in the most supportive way, but this statement is best left unsaid unless you actually have fibromyalgia. When we are not feeling well, we often get angry at people who claim to know how we feel. We may strike out at you and yell, "No! You DON'T know how I feel!" (This is also true during childbirth, but that is a different story.)
"I know how you feel...I have..."This is even worse than the first statement. Not only do you not know how we feel, you have suddenly turned the conversation to focus on you. We love you and want to support you, but if we actually admitted we aren't feeling well (which we rarely do), focus on what we are saying. After we have a chance to express our feelings, we promise we will focus on your situation.
"You don't look sick..."
Fibromyalgia is a chronic illness that varies from day to day and moment to moment. It changes the way our brains process pain and amplifies pain signals from our nerves. It affects our central nervous systems and affects our entire bodies. You can't see it on the outside, but we are sick. You wouldn't go up to someone with cancer and say, "You don't look sick." A fellow fibromite replies, "Yeah? Well, you don't look stupid."
"You look as bad as I feel."
When we aren't feeling well, it doesn't help to tell us that we also look awful. Always the optimists, we may say, "Thanks, I'm glad you are feeling great today!"
"I get tired, too."
People with Fibromyalgia don't just get tired. We know what tired feels like. Fibromyalgia causes you to feel bone tired. Your body is so heavy, you can't lift your head off the pillow. Some days we can't even shower and dress ourselves without collapsing on the bed crying because that took all of our energy. We can handle tired. Picture Superman and Kryptonite. That is our definition of tired.
"I read about this doctor (medicine, herb, exercise) ..."
We have doctors, sometimes many different kinds of doctors, taking care of us. While we appreciate your love and support, we are often in so much pain we will try anything. There are many people who are more than willing to promise us a miracle for the right price. Most of us have tried just about everything. And remember, just because it is natural or an herb doesn't mean that it is harmless. Some of them interact with our medications and cause serious side effects. We may smile politely and act interested, but this is another thing that is best left unsaid. (Unless you are a doctor).
"You know, if you would only exercise more (lose weight, eat better, think positively)..."
When it takes everything you have to go to work or school day after day, it is hard to take care of yourself. We know exercise and losing weight will make us feel better, but we also know that exercising today will probably make us crash for three or four more days. When we need the little bit of energy we have to meet our daily obligations, we can't risk crashing for the rest of the week. Many of the medications that give us energy and take the edge off the pain also cause weight gain. We know you care about us and want us to feel better, but this comment won't motivate us. It will only hurt our feelings and make us feel misunderstood. This one is also best left unsaid.