More things never to say to some one who has fibromyalgia

Seriously people, what’s with all the negativity? I feel like I’m swimming in it lately. There are just too many people around me who seem to be waiting for me to fall flat on my face. I keep hearing things about what I can/can’t do, or what I can expect out of life. The ridiculous thing is, they don’t even have fibromyalgia; they have a “basic understanding” from what they’ve read on the net or have heard from other people who don’t have the disease either.

With that in mind, I’ve got a few more things to add to the list of things to never say to someone battling the invisible menace.

  • “I know someone who has that, their life is miserable!” OR “I know someone who has that, but it’s nothing like what you’re describing.”

    Rule #1 about fibromyalgia: it’s different for every single person that has it. That’s why it’s so hard to diagnose and treat. No two cases are the same, they may have similarities, but you cannot compare them. Just because things went one way for one person does not mean they will be that way for anyone else. Part of the reason things are so different from case to case is simply due to the way people react to having it. True, at some point most of us go from being angry to being devastated (or vice versa) and then eventually we accept that we have to live with it. How you decide to live with it is entirely up to you, and will undoubtedly have some impact on how the disease affects you.
  • “It’s only going to get worse as you age.”

    REALLY?! Think about it for a second, does anything health wise actually improve as you age? Unless you’re Benjamin Button, EVERYTHING gets worse as you age. Your metabolism slows down, your joints wear out, your memory starts growing holes in it, your hair falls out and you get all wrinkly. Sure, old age probably isn’t going to help the fibromyalgia any, but it shouldn’t be a surprise to anyone that it might be worse in your sixties than it was in your twenties. The upside is, there is research being done and eventually, they will come up with something that helps.
  • “You can’t possibly expect to have a ‘normal’ life with this disease.”

    Actually, yes I can. Not only do I firmly believe that a person can do anything they put their mind to, my belief in myself is unshakeable. I know myself well enough at this point to be able to say with 100% certainty that if I want to do something, I will. True, having fibro adds about 50 pounds to the weight of the baggage I’m lugging around, but it only makes me that much stronger. I’m not saying that I can wish the disease away, or that if I ignore it, it doesn’t exist. Short of some miracle cure, I will always have fibromyalgia. I know that. However, I also know that I am creative enough and flexible enough to find a way to do anything I want to. That’s just me personally, I’m certainly not saying that everyone who has fibro is going to be able to do the same, but I think many people would be surprised if they tried. One major thing to keep in mind is that the goals I have for myself are realistic. When I say I can “do anything I want to” I’m not implying that I could be an astronaut or that I want to climb Mt. Everest.
  • “What happens if your plan stops working and you start feeling bad again?”

    Eventually, my body will get used to the endorphins from exercising, and losing weight will only help so much. I’m sure that at some point, I’ll have to go back to the drawing board for a new way to fight the pain. I started this experiment with the diet and exercise with no real expectations of success. I know now that it is possible to alleviate the pain. I’ve also learned that the way I react to the pain is the most important factor in how the fibro affects my life. I can’t always stop the pain, but there’s no rule that says I have to be miserable about it. Ok, so I have to spend a day or two or three in bed; as soon as I’m able, I’ll get back up. In the meantime, I can read a good book, watch a new movie, write a new blog post… Yes, it sucks to be forced by your own body to stay in bed all day, but there are worse fates. I’ll take my victories where I can get them, as long as I wake up, I win.
  • “Oh, you’re just in an ‘up’ phase right now, you’ll have a ‘down’ swing eventually. You won’t be able to fight it forever.”

    Want to bet? I didn’t call this blog “Fighting Fibro with Fire” just because I thought it sounded good. I am determined to fight this until the day I die. I know that there will be setbacks, and I know that I will have bad days, but as long as I breathe, there is always tomorrow. I have been in the dark, I have seen what rock bottom looks like and it terrified me. Mark my words: I will not ever go back there again. I found the strength to pull myself back from the edge of the abyss and I know without a shadow of a doubt that I am strong enough to keep myself from going back.

Part of me feels that these lists shouldn’t be necessary, that not saying these things to people with chronic illnesses should be common sense. Obviously, that’s not true, seeing as the only reason I am able to compile these lists is because people have said them to me. Initially, when I started writing this post, I was angry and ready to tell the people who said these things to “go to Hell”; after typing all of this up, I find that the anger has dissipated and all I feel now is determined. I am determined to prove these statements wrong and I am certain of my success. All I want to say now is, “hit me with your best shot”.

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2 Comments (+add yours?)

  1. The Silence of Pain
    Jun 14, 2013 @ 21:58:19

    I really enjoyed reading your posts, and understand how you feel. An excellent point you made is that ‘it is different for every single person’. This is so true. I have a friend who has it, and I just asked her last night how is her fibro. She stated…”oh, it goes in and out, I have not had any pain lately”! I was totally blown out the box. There is not a day that goes by that I don’t have pain. I do not know what it feels like to NOT have pain. Fibro does affect every one is differently for sure.There are some symptoms that are a “Standard” if you have fibro, which are those determined after they rule out everything else. Once we can accept the fact that we have fibromyalgia (because getting out of denial is sometimes difficult), then we will be able to graduate to the next level of fighting fibro with fire. What this means to me is fighting fibro with the faith, trust, and expectancy to live a normal life in spite of the bondage that fibro diligently tries to keep us in. As you stated, we have our good days, and certainly our bad days. The point is, we are given another day to look fibro in the face with confidence, that it will not beat us!

    Barbara

    Reply

  2. seriouslythisismyreality
    Jun 19, 2013 @ 02:34:07

    Thank you for sharing this. It’s hard to feel the way I do when no one understands. It’s is so true that no two fibro-warriors are the same. The one thing that we all have in common is our empathy. I wish more people could be a little more compassionate. Good luck to you.

    Reply

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