10 Things not to Say to Someone with Fibro by Heather Johnson-Coleman

I ran across the following on a Fibromyalgia blog and it really hit home with me. I have heard most of these… and while I know that they are from well-meaning people, it’s frustrating to not have people understand what I am really feeling and going through…

10. We all get more aches and pains as we get older

 The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn’t hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too… I am always tired

 This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are like someone pulled your plug, cutting off your source of power. It’s kind of like taking the batteries out of the Energizer Bunny.

 8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc) to take your mind off the pain

 Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but the suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn’t work well enough to allow you to consistently work a 40 hour week. And it doesn’t help dispel the extreme fatigue that usually accompanies FM.

 7. My doctor says fibromyalgia isn’t a real disease; it’s just a wastebasket diagnoses

 First of all, this doctor obviously hasn’t kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don’t approve medications to treat imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can’t figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

 6. If you got more sleep you’d feel better

 Well DUH! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you’re most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep that you need.

 5. I read about this new product that cures fibromyalgia

 This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently come kind of “natural” supplement  being sold through some kind of multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it’s someone closer to me who is likely to keep asking if I’ve tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can’t afford to try them all. Read Let The Buyer Beware for tips on how to evaluate product claims.

 4. At least it’s not fatal

 My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I would know there was an end to the pain.” I rarely say that though. Of course I am glad it’s not fatal. But that doesn’t help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I am thinking when someone makes this comment. At least it might get their attention.

 3. You just need to exercise more

 Often this is another way of insinuating that you are lazy. This comment in particular has always bugged me. Perhaps it’s because I used to be a dancer and aerobics instructor. If more exercise were the answer I would be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it’s only one part and it has to be approached slowly and carefully to avoid triggering a flare.

 2. But you don’t look sick

 This comment puts the FM patient between the proverbial rock and a hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don’t want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we’re sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn’t even know anything was wrong until it was too far gone to treat. She didn’t “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn’t have visible sores or a crippling deformity doesn’t mean there’s not a serious illness just under the surface.

 

Taa Daaa  Here it is- the number one thing you should NOT say to a fibromyalgia patient

 1. It’s all in your head

 This is the all-time worst and most insulting thing you could say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You’re right, it is in my head. Researchers have found that their is a problem with how my brain processes pain signals.” Enough said.

 I hope this article allows you to think before you comment. Fibromyalgia and Chronic Fatigue Syndrome are real diseases. Although the person looks like there is nothing wrong, if you watch, you will notice how they gingerly stand from a sitting position or lower themselves into a chair. You will notice periodically that they substitute a word for another. Their cognitive process works as if the electricity can’t get through the line without interruption. Their balance is not as good as it once was. They have trouble lifting a ten pound bag of potatoes. They are always physically and mentally tired. Be observant of your friends with Chronic Diseases, including Fibromyalgia and Chronic Fatigue Syndrome. Your friendship will be better for it.

Next Blog Entry on Friday, More info on Common Fibromyalgia Meds

4 thoughts on “10 Things not to Say to Someone with Fibro by Heather Johnson-Coleman

  1. Pingback: It’s All In My Head | Curse of the Invisible Illness

  2. I’m so tired of saying to any doctor how I feel…. I keep getting looked at like I’m being over watched to see if I’m making this crap up!! It’s so unfair… 😦
    I wish I could just put them in my shoe’s and let them walk a while in them….Humm??

    It is nice to know there are others out there feeling the same pain I feel…. I have to hide most of it from my parents… they have enough on they’re plates to worry about, so I just go on mostly as nothing is really wrong. Although, I would like to scream most days.

    • I understand how you feel as I believe it is the height of arrogance when docs look at you like you’re crazy, instead of saying “Gee I don’t know, let me try to find more info”.
      As with all professions, there are good Docs and Bad docs, a good one is a lifesaver, a bad one is a disaster. If you’re not on our facebook page (no more fibromyalgia), please join as there are a lot of warm supportive people who can totally identify with you.It is a support and info page. Dr. Gene Martin

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