If your loved one is diagnosed with fibromyalgia, one of the most important things you can do to help them is to acknowledge that fibro is real. You may think it's not necessary to mention this fact, but there are even doctors who don't believe fibro exists. Of course, I'm not a doctor myself, but I am reading several different books in order to learn more about fibro (and I have a real-life hands-on "research aid" in Nick).
I can only imagine how hard it would be to struggle every day and have those closest to you refuse to acknowledge and validate what you're going through every minute of your day. Even though you can't see fibro (which makes it very hard for people to understand), it is very real to those who are fighting it. It is a terrible misconception that fibro fighters are lazy or hypochondriacs. In reality, they usually tend to be Type A go-getter-type people, which makes it that much harder for them to reconcile their old life with the one fibro has now given them.
One of the most obvious questions I would pose to a disbeliever is: "Do you REALLY think a normal, healthy person would fake a chronic illness that causes them to regularly miss out on many fun activities with friends and family?" The answer is obviously no! I see Nick on an almost daily basis, and I have definitely noticed that his symptoms change, and his pain and energy levels fluctuate. He would have to be the best actor I've ever seen in my life to be "faking" his fibro. Most of the time, I can tell in his eyes and face if he is in a really bad flare. For those who are not familiar with fibro, a "flare" is a temporary increase in the number and intensity of fibro symptoms. Those with fibro spend quite a bit of time trying to avoid them, but it is not easy, especially when there are so many triggers. Please take a few minutes to read Karen Lee Richards' article "10 Causes of Fibromyalgia Flares", and you will see how many of these causes are beyond their control.
I have heard several descriptions of what fibro feels like. The most common explanations are: "the world's worst case of the flu", "a hangover without any of the fun of getting it", "a blood pressure cuff pumped up all over your body" or "like a clothespin stuck on the end of your finger but all over". From talking with Nick and others who have fibro, these comparisons don't come anywhere close to explaining the nightmare that is fibromyalgia, but they give laypersons a base to imagine what it's like in terms they might understand.
There are so many different symptoms that manifest with fibro (over 300!) that it can seem strange and impossible at times and hard to explain. I plan to address many of these in future posts. No two patients are the same, and I imagine this is one of the biggest obstacles to making progress in finding a cure (you don't want to get me started on doctors and pharmaceutical companies who would rather treat the symptoms than the cause). Please don't be afraid to ask your fibro fighter questions about their particular symptoms in order to better understand what they go through each day. They will certainly thank you for the effort.
Peace and Love,
Kim
I can only imagine how hard it would be to struggle every day and have those closest to you refuse to acknowledge and validate what you're going through every minute of your day. Even though you can't see fibro (which makes it very hard for people to understand), it is very real to those who are fighting it. It is a terrible misconception that fibro fighters are lazy or hypochondriacs. In reality, they usually tend to be Type A go-getter-type people, which makes it that much harder for them to reconcile their old life with the one fibro has now given them.
One of the most obvious questions I would pose to a disbeliever is: "Do you REALLY think a normal, healthy person would fake a chronic illness that causes them to regularly miss out on many fun activities with friends and family?" The answer is obviously no! I see Nick on an almost daily basis, and I have definitely noticed that his symptoms change, and his pain and energy levels fluctuate. He would have to be the best actor I've ever seen in my life to be "faking" his fibro. Most of the time, I can tell in his eyes and face if he is in a really bad flare. For those who are not familiar with fibro, a "flare" is a temporary increase in the number and intensity of fibro symptoms. Those with fibro spend quite a bit of time trying to avoid them, but it is not easy, especially when there are so many triggers. Please take a few minutes to read Karen Lee Richards' article "10 Causes of Fibromyalgia Flares", and you will see how many of these causes are beyond their control.
I have heard several descriptions of what fibro feels like. The most common explanations are: "the world's worst case of the flu", "a hangover without any of the fun of getting it", "a blood pressure cuff pumped up all over your body" or "like a clothespin stuck on the end of your finger but all over". From talking with Nick and others who have fibro, these comparisons don't come anywhere close to explaining the nightmare that is fibromyalgia, but they give laypersons a base to imagine what it's like in terms they might understand.
There are so many different symptoms that manifest with fibro (over 300!) that it can seem strange and impossible at times and hard to explain. I plan to address many of these in future posts. No two patients are the same, and I imagine this is one of the biggest obstacles to making progress in finding a cure (you don't want to get me started on doctors and pharmaceutical companies who would rather treat the symptoms than the cause). Please don't be afraid to ask your fibro fighter questions about their particular symptoms in order to better understand what they go through each day. They will certainly thank you for the effort.
Peace and Love,
Kim
Thank you for sharing this, Kim. As a Fibro patient I have enough times where I have a difficulty accepting that Fibro is real. I want a better answer, one with a test that backs it up. So, yes it's even harder when those around us question it. We need those who love us to encourage us to accept our diagnosis and work with it, rather than fight against it.
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