We asked to our community “Living with fibromyalgia and Chronic illness” a question “How to Understand Someone With Fibromyalgia? Give your suggestions to non-fibro peoples” and they shared their thoughts on it, We have compiled their answers in the post below.
Here is what community share it with us:
Naomi Goldsmith says: Everyday is a struggle please know we are trying our best. If I have to stay in bed for the day please don’t envey me I’m in bed because I over did it the day before and my body needs to recover
Tonya Lee says: Basically I tell people to imagine having the flu and a hangover at the same time. Then times it by 10.
Jessica Streed-Puddicombe says: I think it depends on what you mean by “understand someone.” We can tell people what our symptoms are, aches & pains, etc. Like saying “I have a headache, or I getting shooting needle,like pains”, etc. Though subjective, it gives a kind of specific answer. Then you move on to explaining that you experience many of these symptoms all at once. Some of the other symptoms that are harder to express, the “it feels like” explanation. Then moving on to try to explain the fatigue that goes beyond feeling like you didn’t sleep well for many nights. Then trying to explain the depression you experience. As much as you explain this to a person, they will hear the words but unless they have experienced these things or the “it feels like…” comparisons then it’s hard to understand.However that is just part of the equation of understanding someone with fm. Beyond the subjective information, how to get someone to understand how this affects every aspect of our lives is more difficult . To fully understand someone with fibromyalgia you would have to be able to be that person, if only for a day. Unless you live it, I’m not sure a person could understand. There is such a profound impact on our lives beyond the physical pain. The kids events that have to be missed, the family get together you can’t make it to, not being able to sit in church on a beautiful day with your family, the housework that can’t get done, the hobbies we’ve had to give up, our careers that had to be left, etc. and then add the guilt we feel for all of that as well. To understand it might be to have to feel it. I think even our loved ones that we think understand it don’t truly grasp what it truly is like. They see the sleeping all the time, the lying on the couch because showering feels like a chore, the dirty dishes in the sink, the dirty laundry piling up, and they don’t understand the energy it takes to try to even do one task. They listen to us “whine” about our pain even though we try very hard to keep it to ourselves but meanwhile might be rolling their eyes or thinking, “really?!?!” Unless someone can “walk a mile in our shoes” I don’t think others will truly understand. But God bless those we love who try very hard to understand!
Jolynn Stoumbaugh says: Listen don’t judge. If the person is someone close to you do research, ask questions. Just be there for that person unconditionally. Compassion is so important.
Don Weitzel says: You wake up every morning and take it as it’s threw at you brain fog and no muscle strength with neck spasms .but always. Keep in mind some one else has it worse …I know sometimes I hardly believe it myself . this desease is not for wimps just have to dig deep and fight it or it will take over your life .
Dottie Hanussak says: Very interesting question, and I had to stop and think about it. I do not think there is a way to understand someone with Fibro unless you have a close enough relationship with the patient to have that patient speak freely to you about the disease and what they feel as to pain. Out of 4 girls and 2 boys, all in their mid 40’s and up, only 2 of them get it. I have taken to sending them anything I find on FB or elsewhere that describes Fibro if it matches how I feel. The other 4 are finally starting to get it.
Phillip Chamblee says: There is no way anyone can come to understand this I have had it for years and I still dont have a clue how to explain one day you fight the next your ready to end it there is no rime or reason for this and after tears and years of pain family or the first to judge you I have about lost everything and they are slipping away and this may be mean but just dont care too much anymore
Julie Canny says:The best way I’ve been able to explain Fibro is that it is like having the flu every day. Severe body aches, weakness, nausea, headache, lack of appetite, lack of energy, wanting to die, guilt for not getting things done.
Angela Mcevoy says:Believe them..help them as much as possible. Offer assistance with chores. Cook a meal for them. Don’t stress us out. Don’t judge. There’s alot.
Sharon Kaplan says: I don’t know if it’s actually possible to describe in detail what we go through. Our battles are our own. We are the warriors of our lives. Pain is our enemy and constant companion. Yet we get up every day and we fight. For our lives. Our sanity. And for the belief that it will get better.
Tina Louise says: Tell them is like being beat with a baseball bat! How would it feel after the bashing! Yep that pretty much explains it all
Holly Olufs  says: Understand that they are having to find themselves again. They are having to greeve over the loss of their old life and find a way to live this painful, exhausting, and confusing life and still feel useful without being useful. Educate yourself about it. Don’t expect us to handle your misunderstanding and judgement very well. We already have too much on our plates.
Sparkle Johnson says: It’s a everyday constant pain but u learn how to control it… you live it don’t let it live you. I have my good days and bad ones but most importantly speak about it with someone who has it and maybe they can give you some advice that can help you.
Kate McPhee says :Do you ever just feel like no one gets it?! They say they understand, but really what do they do to understand. They don’t let you just vent, and when you do, you feel like you’re just complaining and whining about it. I don’t talk about it to get pity. That’s the last thing I want. I talk about it, to try to make people aware of it. To make them understand, I’m not making it up… I really do hurt ALL the time. I really am exhausted ALL the time. I really do struggle to get through the work days. And when I’m home laying in my bed, I feel guilty because I should be cleaning the house or doing laundry. I don’t want to be like this. I want to be normal… whatever THAT is.
Kelly Campbell says: You can’t.
You have bruises covering 100% of your body. Every bone is broken (yes, even the three little ones in your ear). All tendons and ligaments have been detached from muscle and bone. There’s a 6th grade drum ensemble practicing in your head. Oh and you’re on fire. But you don’t want to bother people so you say NOTHING, suffering in silence when all you want to do is scream. You become a great actor and your go-to line is, “I’m fine,” cue the smile.
Share your thought with us, if you want to add your answer, put it in the comments below…
