Fibromyalgia Experiences

We want you to try to understand us, as much as anyone that doesn't have these diseases could.

We want you to sympathize. This isn't easy for us.

We want you to know that we appreciate all you do for us, literally and figuratively, even when we don't show it. We are glad that so many people take the time to help. The fact that you are reading this proves that you're one of these people. We know this isn't easy for you, either.

We want you to know that when we cancel things because we aren't feeling well, it's not personal. Even when we cancel at the last minute, it's still not personal. These illnesses are unpredictable. We can suddenly have a bad health day just as easily as we can suddenly have a good health day.

We want you to know that we can sleep as much as you and still not feel nearly as rested. It's the quality of sleep that matters, not the quantity, and people with our illnesses tend to have a lower quality of sleep than healthy people. We can wake up feeling worse than when we went to sleep, too. We know this is hard for you to understand.

We want you to know that there's no cure for fibro, CFIDS, or any of these other related chronic illnesses. (This is a question I get asked frequently by people in my life.) Yes, there are things we can try to do for them, and yes, we're trying them. We've tried lots of them. We're doing the best we can.

We want you to know that a lot of doctors and other health care professionals aren't very sympathetic towards these illnesses, and that we'd like support when we run across insensitive health care professionals. It is incredibly demeaning and insulting for us to be told things like "It's all in your head" or "You should see a psychosomatic specialist" about our very real, very physical pain. Sometimes we want to vent about it, even though we know there's usually not much you can do about it. If it happened to you, you would be insulted too.

We want you to know that a lot of everyday people also think that it's all in our heads, or that we can't be "that" sick if we don't "look" sick. Believe us, it's not all in our heads and how we look does not necessarily reflect how we are feeling health-wise. People with fibromyalgia have, amongst other things, overactive substance P, which is a substance that helps regulate how pain is felt in the brain, so all our pain is actually stronger than in healthy people, not less. As with health care professionals, sometimes we want to vent about it.

We want you to know that just because some of us can't hold down full-time work and/or full-time school doesn't mean we're lazy or stupid or underachievers -- and it doesn't mean we don't want to do these things. These illnesses are incredibly draining and unpredictable. A lot of employers don't want to hire someone that can't be guaranteed to work every day at set times. And school can be extremely draining to already-drained people. Many of us that can't do full-time stuff would love to be able to do so. And for you to imply that it's something we've chosen adds insult to injury. We didn't ask for these diseases, nor for the ways they have impacted our lives. Again, we're doing the best we can.

We want you to know that little things mean a lot to us. We really appreciate the little things you do for us, even when we forget to tell you.

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