Posted by: Little Miss | February 24, 2008

Telling Friends

I used to think it was a good idea to disclose to my friends that I have Fibromyalgia, so they could understand why I can’t do certain things, maybe appreciate why I’ve gained some weight, or why I can’t keep up with the things I used to do. I hoped that by disclosing, I’d get sympathy and understanding – and who knows, offers to help? I’ve learned this is not such a good idea and I never get the reaction I hope for. Well, except for once. A friend of my mother’s was truly saddened to hear it as he had a friend who had become completely disabled from it.

Mostly, the reactions I get run like this:

Comment 1: “Oh, I had that years ago. When I got myself out of the stressful situation, all the symptoms completely disappeared and have never returned.”

Translation: It’s all in your head and it’s only caused by stress.

Or…

Comment 2: “You know what Fibromyalgia really is, don’t you? It a few doctors getting together and deciding that if you hurt in these 18 places they’d just all tell you that you have fibromyalgia. Not to say that you aren’t really in pain, but…”

Translation: It’s all in your head and it’s a fake disease because doctors don’t know what’s wrong with you or there’s nothing wrong with you.

Comment 3: (After disclosing to a friend who had the flu that I ached all over from a flare up.) “Well, the good news is for both of us this will go away.”

Translation: It’s all in your head and you really just have the flu.

These were comments that were really said to me over the course of the last week. To the first person, I didn’t respond. To the second person, I commented after he continued to point to his head and imply that I shouldn’t let it take over my thoughts and consume me and that I could think myself better. SERIOUSLY. I told him that if I could have wished my way away from this, I would have. To the third person, I said, well, your aches will go away. Mine keep coming back.

Let me say here, Internet, this shit is NOT in my head. I’ve tried for the last year to do everything possible, including diet and exercise, to make this go away. I’ve tried to ignore it and “act as if” by doing everything I’ve been used to do. My body slaps me down and forces me to stop. Anyone who really has fibro knows exactly what I’m talking about.

The only analogy I can think of to describe this is that telling someone with fibromyalgia to just not let it get to their head and to not let the fibro take them over is like telling a drug addict or alcoholic to just have some willpower.

This ignorant attitude of others just pisses me off. And how do I educate them? Can I even educate them? I don’t know if I can. Never mind that the American College of Rheumatology recognizes it, so does the Mayo Clinic, or that the Job Accommodation Network, as part of the U.S. Department of Labor, has guidelines on Fibromyalgia accommodations, and so many other legitimate entities also recognize it.

I do know that I have decided that if anyone truly wants to know what is wrong with me, I just tell them – as was suggested to me by my younger daughter – that I have chronic pain. Or that my back is hurting me. That they understand. When you tell them it’s fibro, it’s like instant eye-rolling, sighs, and the implied, “Oh, that. That’s a fake disease and you’re just being lazy.”

The truth is that when some people ask you how you are, they really don’t want to know. It’s sad, but true. And as I was talking with these people who said this, all I could think of was that I wanted to talk with my circle of fibro friends that I’ve met and tell them about this. I knew they cared and would understand. That has to be enough for me. And I think it is. I know this isn’t in my head. I no longer need to convince the world also.

~~~~~~~~~~~~~~

Update on the Gabapentin: It seems to be working. I’ve not experienced any restless leg syndrome lately, unless I don’t take the meds at the same time each night, then I get some RLS. Or if I’m extremely over-exhausted, then I do. I’m not sure if it has helped with the fibromyalgia overall, or if my attitude has changed and I’m refusing to sit still regardless of how much pain it causes me. Could be a little of both. The jury is still out, I guess. Besides, I’ve only been taking it for a month and it’s a little hard to tell so soon.

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Responses

  1. You’re right, who cares what they think? After all, it’s all in their head.
    If they’re not on board you can’t carry them along. You have to think about YOUrself – and your family first.
    Your true friends will come around, they can Google or Search Fibro on the Internet – right?
    F@ck the rest of the lazy jerks.
    I know these are hard and harsh words but Fibro does not just go away. @Poof!@
    Everyone is just going to have to come to you, you can’t chase them around.
    Relax. Have some Green Tea. Enjoy the sunset.
    The only sad thing is eventually you end up with only Fibro Friends on the Internet.
    Thank goodness for the internet – we’d be complete shut-ins.

  2. Exactly, LK. Thank goodness for the internet.

  3. I am so glad you shared this! I think an often forgetten aspect of FM is the social stigma you have to contend with on top of everything else and you’ve demonstrated that perfectly here. I would like to think that for every 10 people you tell, there will be that 1 who really gets it and understads and that 1 can make all the difference if we just learn how to survive the other 9. But yes, odds are better here in cyberland where we can stamp the big FM on our foreheads and know there will 9 out of 10 who get it.

  4. i’m sorry. some people should just keep their yaps shut. i go thru this with C’s vision impairment. “but he wears glasses, doesn’t that fix it?” “can’t he just have surgery?” “but he can read and does well in school?”

    glasses make the print bigger so it is easier to read. there is no surgery. it is a neurological impairment. he reads and does well in school because he is so freakishly smart that he can compensate for the vision. just think of what he could do w/ normal vision? he can get thru day, but it takes him ten times as much energy and focus as it does a person with normal vision.

    keep doing what *you* need to do to stay healthy and feel good. don’t worry about the ones who don’t understand. they are simple uninformed.

  5. Mermaid, you are right. They are uninformed, even though they probably mean well. I have learned from this to a) keep taking care of myself, b) I know I have fibro and it’s real and that’s enough and c) when I think I understand what someone else is going through, I really don’t. How could I? I am not in their shoes. Each time someone shares with me, I hope to remember that this is an opportunity for me to just LISTEN and LEARN. Maybe I’ll write more about that soon. 🙂

  6. I’ve only once ever had anyone tell me in person that she had fybromyalgia — about 2 months ago. She wanted to make sure I didn’t think she was a slacker at work because she was out sick so much. I had already guessed the condition and certainly never thought ill of her, having suffered my own illness that kept me out of work 6 months.

    As the conversation went on I told her honestly that I believed, having read quite a bit more than average on the topic, that it was a broad syndrome and was probably of organic physical causes in some people and in others had psychological primary causes. Later in the conversation I expressed my strongly felt position that those suffering from psychologically caused illnesses should be given every bit as much respect and understanding as those with “structural” conditions.

    And you know, she was so relieved to here me say this! It turns out she had come to believe herself that her diagnosed fibromyalgia was from a form of PTSD, but felt she couldn’t tell anyone this because of the stigma of a psychological condition — and rejection from within the fibro “community” for her own diagnosis and understanding of her symptoms.

    So it cuts both ways. Why is psychological a stigma? Why do some many consider it so much worse if the diagnosis is psychological? Why are people in the fibro community often so much more insulted by a phychological theory than an alternate physical theory that isn’t the one they currently believe?

    You don’t here people say “The nerve! He suggested that it is caused by a excess calcium. I don’t know if I can talk to him again.” And yet if it’s a psychological suggestion, that’s pretty much the reaction. I’m not blaming the sufferers, but society as a whole, for assumeing a stigma should be attached.

    The problem is that this irrational stigma of a psychological diagnosis prevents people from properly investigating that route when it very well could be there answer — might also very well not be…but so many close off whole areas of research because of this stigma.

    But I totally agree no one should assume something of anothers condition. But the idea that such symptoms *could* be psychological should not be taboo and should not be considered an insult in itself.

    Not to say I don’t think person #2 sounds like a jerk. I hate people who aren’t even medically trained yet assume to know more than you do about your own health. #1 in itself I see nothing wrong with (just her own story), though the person may have said more…and #3 from your quote just sounds ignorant of the recovery rate. Maybe you could add a little more context to flesh out that one and make clearer why you came to your interpretation?


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