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Fibromyalgia Acknowledged / 3 Sure Remedies That Will Lift A Discouraged Heart

How impacting is it when someone in your life actually acknowledges your Fibromyalgia?

To have Fibromyalgia acknowledged by someone you care for in your life can have a huge impact. Recently, someone I love was talking to me about something physically painful to them. I asked them to give me a comparison so that I would be able to understand the level of pain they were referring to. They said, “Well, you would be able to handle it better than I did since your pain tolerance is so high. You know, because of what you endure everyday with Fibromyalgia.”

Wow. I don’t think they realized what that meant to me. Not only in the fact that they helped to legitimize an all too real struggle based soley on those two sentences, but that they actually remembered the name for it! How many times do we hear, “What’s that thing you have? Febromalchy, Fibomening…what is it again?”… No one ever mispronounces arthritis, or diabetes.

Having your FMS acknowledged by someone you care for can have a huge impact... Click To Tweet
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Truthfully, that’s completely OK with me. I know it’s not their struggle. I really don’t expect them to remember every detail that pertains to my health and wellness. As human beings, we are limited to the boundaries of our own mind and momentary experiences. It takes an effort to focus on others, and commit their personal details to memory. We usually have more than enough to deal with in just dealing with ourselves.

Fibromyalgia patients in general learn to ‘keep it to themselves’. In fact, I try very hard not to show any signs of discomfort just to avoid the questions that follow. Explaining FMS after being asked, “What’s wrong with you?”, usually turns into an exercise in ‘defending’ myself and my condition…no thanks. Which is why it was a simple, yet lovely thing to know this person cared enough to ‘remember’.

Explaining FMS usually turns into an exercise of 'defending' myself and my condition... Click To Tweet

Fibromyalgia Acknowledged / 3 Sure Remedies That Will Lift A Discouraged Heart

Fibromyalgia Acknowledged / 3 Sure Remedies That Will Lift A Discouraged Heart

  1. Lower Your Expectations ~ do not anticipate being the center of everyone else’s universe. Each individual is trying the best they can to cope with their own unique junk. Try not to take it as a personal offense if they can’t remember the name, or full nature of your condition. Maybe it’s enough that they are even asking about it.

  2. Find Legitimacy In Your Own Experience ~ find a way to come to terms with the ‘reality’ of FMS. It may not feel good, but the truth is, it does not matter if someone does not believe FMS is an actual disease. You’ve got it, you know it’s valid…now ‘rock’ it as best you can!

  3. Appreciate The Crumbs ~ there are times when you will crave the full meal of ‘validation’. Meh. So they don’t ‘get it’ as much as you want them to…really, it’s not necessary. And you don’t need them to. Practice thankfulness for anything people are willing to give you. Sometimes suffering quietly with dignity, can make you a better person. The ‘internal battles’ are the great ‘warrior creators’ of our lives.

You've got it, you know it's valid...now 'rock' it as best you can! Click To Tweet
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18 Comments

  • Reply
    Pippit
    July 4 at 3:02 pm

    I think maybe wearing a T-shirt with bullet points would be a good concise way to educate others without overloading them with information. As long as they get the main points you want them to understand that can go a long way.

    If they forget the name of it that’s one thing, but when people assume you can do something you’ve told them 50 times makes you worse, and get irritated when you set limits or that whole bit about picking at you and forcing you to have to defend yourself then that’s probably not something to lower your expectations about.

    On occasion I have had to directly tell people I’ve already explained it to them and that I’m not going to keep re-explaining why this and why that. I have had to tell them this is the new normal and they just have to take my word for it. It’s really a matter of respect and showing that they view you as a credible person. That is a pretty important cornerstone of any close relationship.

    There are some instances when people play dumb and really haven’t forgotten what you’d told them but are just “poking the bear” so to speak. I had one “friendship” end over that but later I realized it was for the best because this woman seemed invested in keeping her ignorance and was constantly making really snide remarks which were really statements masquerading as questions (you probably know the type).

    I think the last straw was when I’d made $8.00 from an Etsy sale and she asked if the money made my disease better. This was somebody who knew better. I didn’t really get angry but felt more like Oh Brother, here we go again. I knew that this was one of those “questions” that was a set-up any way I answered it, so I just turned to her and calmly said “I really don’t need to answer that.” She flew into a rage and yelling and screaming and pounding on her steeringwheel insisted she turn the car around and take me home, along with calling me a loser, and hurling all kinds of insults at me.

    Previously my approach with her was to lower my expectations and start limiting how much time I spent with her but I found that working less and less over time and it seemed the more ground I gave, the more ground she took. I was actually kind of relieved not to have the constant badgering anymore and toxic influence (which I’m sure didn’t help my disease while I’d been enduring it on a regular basis).

    I find now that I want to be alone more and have re-evaluated the types of friends I want in my life, how, and when I interact with them.
    Pippit recently posted…Emory Turns Patient Away At Clinic; The Last StrawMy Profile

    • Reply
      kristine
      July 4 at 4:21 pm

      Thank you for this Pippit. Allow me to clarify my meanings~
      I am not using the phrase ‘lower your expectations’ in the sense of ‘put up with abuse from toxic relationships because you can’t defend yourself or do better’. The point I am trying to make, is this: ‘I’ have at times become offended when people in my life did not readily remember the name of my condition, or asked me (not for the first time) what it means. These people were not trying to ‘hurt’ or ‘jab’ at me. They were just occupied with their own thoughts/problems/life, so they did not pay close enough attention to the times when we had talked about FMS before. (guess what? I am guilty of the same thing concerning parts of their life they have shared with me. We are ALL guilty of this at one point or another).
      I have had to realize that MY issues are not necessarily the focal point of other people’s lives. In other words, my offended feelings at their preoccupation at the time with other things, will not change how they see my condition. What needed to change was MY response to them in giving them grace to realize that although I did not appreciate their lack of attention, I can be just as guilty of the same thing. This in no way means that we should not expect respect, and care from the people in our lives. I would never say that.
      These realizations help me to continue to grow, and be aware that I need to treat other people with the same relational attention that I would like from them. To simply ‘lower my expectation’ of ‘my ideal’ in how they should consistently respond to me and my struggles. Which is the same mercy I hope to recieve when I screw up with them. Which I inevitably will at one point or another! 😉
      The argument I am making is to see the difference between drawing ‘healthy boundaries’ in our relationships, and demanding that people ‘get it right’ where I am concerned ‘or else’. (I don’t hear you saying that, I’m just explaining the ideas I meant to convey when I wrote this article.)
      Thank you again for your time and thoughts. I understand the struggles you mentioned since I deal with many of the same issues. Have a great week Pippit! 🙂

  • Reply
    Sarah G
    July 5 at 11:24 am

    I just came across your site last week, and I love it! Your perspective is so refreshing and real at the same time–exactly what us Fibro Warriors need!
    I also try to keep my expectations low, when it comes to how other people react. And I ALSO TOTALLY try to minimize my pain reactions around others (except my husband who THANKFULLY believes me and cares for me in amazing ways), so as not to upset them OR have to explain myself. Because I totally feel defensive too. This invisible illness stuff will get to ya!
    When I was still working, I had a co-worker/friend who said the best thing to me one day, and I will never forget it. Everyone else says, “you look great!” (little do they know how much it took to get there, right?!), but this person said, “You look good, but how do you feel?” That was the most validating, affirming thing EVER. I get that it’s hard for others to remember how we feel, but to have someone BELIEVE me like that was such a gift.
    Have a great day!
    Sarah G recently posted…Embracing Being EnoughMy Profile

    • Reply
      kristine
      July 5 at 2:01 pm

      Hi Sarah! Thank you so much, what a lovely compliment ♥ And what an awesome connection your co-worker made with you in that exchange. That shows an uncommon perception/empathy on her part! We do get the stinkers with our disease, but there among them the fragrant flowers can also be found! ~ Have a truly wonderful rest of the week Sarah 🙂 ♥

  • Reply
    Ggmandy
    July 9 at 5:59 pm

    It has a lot to do with a post I’ve attitude. But it sure is good to have someone validate your pain.
    Ggmandy recently posted…Build Homes : Build BridgesMy Profile

  • Reply
    Deborah Davis
    July 11 at 6:48 pm

    This is so true and so important! I am so delighted that you shared the impact of having Fibromyalgia acknowledged by someone you care for in your life with us at the Healthy Happy Green and Natural Party!Thank you so much for sharing your gems and for your support! All the best, Deborah
    Deborah Davis recently posted…Power Up with Pro Matcha Plant-Based Protein – Smoothie Recipe and GiveawayMy Profile

  • Reply
    Nikki
    July 12 at 8:27 am

    Kudos to those who remember and want to help. It’s so hard because we look normal. And in my case somedays I look better, since going gluten free the weight dropped off and the bloat, so I may look good, but I still am not up to normal. Walking and stairs are issues for me. And it’s hard to keep up with others when we are walking down the street or in a mall. I hate that. But it’s so nice when it’s remembered and people slow their walk so I’m not 20 feet behind them. LOL
    Nikki recently posted…Social Media Blast-Just Pin It!My Profile

    • Reply
      kristine
      July 13 at 4:26 pm

      Exactly Nikki! Looking ‘normal’, but feeling like crud is one of the biggest characteristics of ‘invisible’ chronic illness! And yes, it is awesome when people are considerate whether they understand or not 🙂

  • Reply
    Brandi Clevinger
    July 20 at 1:31 pm

    I understand it completely. When I told my best friend about fibromyalgia, she didn’t ask a lot of questions. What I later learned is that she did independent research on it to better understand it. She didn’t want to ask me a lot of questions about the illness because she didn’t want me to feel uncomfortable or less than. I appreciated her time to find out what was going on with me without putting me on the spot.

    When others sometime tell me their physical pains, at times I’m told they shouldn’t be crying to me about it because I endure more each day. I tell them, no, don’t minimize one’s pain by comparing it to someone else’s. Someone will always have it worse, and comparing it to someone else will only further damage the person.
    Brandi Clevinger recently posted…+Positive Parenting ChallengeMy Profile

    • Reply
      kristine
      July 20 at 10:33 pm

      Yes! I completely agree! Pain is pain…it’s not a competition! What a fantastic friend you have Brandi 🙂

  • Reply
    Becky @ vintagebeckym
    July 22 at 7:07 pm

    My friends are fabulous and do they’re better is their own way to be a support, But yesterday it frosted my cookies when a friend said in one breath that I needed to share more of my story on my blog and in the next breath, said I needed to exercise more. At least they are trying.
    Becky @ vintagebeckym recently posted…Changes to VintageBeckyM Etsy ShopMy Profile

    • Reply
      kristine
      July 23 at 2:22 pm

      Ugh…the ‘excercise’ comment! Way to be ‘patient’ Becky! 😉

  • Reply
    Janine
    August 7 at 5:14 am

    This is the first positive information I’ve seen on fibromyalgia since I was diagnosed 10 years ago. Thank you for your great perspective.
    We can all sit around complaining to each other about how terrible we feel, or we can chose to get on with life and make the best of it. Yes, I live with chronic pain, but I will do everything I can each day to participate in life and enjoy time with others. The pain will always be there, I can accept that and smile through it, or I can sit down in a corner by myself and cry. I choose life and want to live it to the fullest! That is being strong, having courage, etc. For whatever reason, this is the path we have been chosen to walk, let’s walk it with dignity. And, just for information, I have been on disability for 7 years. I do know the pain of fibro, I just choose to nurture relationships through it. And I do have a “crash day” once or twice a week, but i rest up and get through it and buck up so that I can get back on top. Let’s choose to make the best of what we’ve been given to handle!

    • Reply
      kristine
      August 7 at 7:33 am

      Hello Janine! It’s good to see you here! Thank you for this. I appreciate your kind words, and agree with you completely. For me, I know I will more than likely never get better (hopefully I won’t get worse!), so I have a choice on how to live in my new reality. It’s not always easy, and some days are worse than others, but so many times a slight shift in perspective can be the difference between walking in negativity or hope. Have a wonderful week ~ Hope to see you again! ♥ 🙂 ♥

  • Reply
    Diane Mills
    October 19 at 7:05 am

    Good to hear a more positive approach to this debilitating condition. I was just diagnosed with fibromyalgia in May 2016 after I was taken off duloxetine for another chronic pelvic pain condition that I have, that was causing me to have a high pulse rate! I am not on medication but trying to manage pain through physio and yoga, which is very difficult, due to lots of flare ups! My hubby is very understanding and gives me lots of support, I also have a best friend, who understands that I can’t always see her on bad flare days, I understand her too, as she has her own issues to deal with, as has a disabled son, so we help to support one another. Humour is one of the best remedies, also lots of hobbies, I am a published poet, so I enjoy writing poetry, singing, music, art, photography, I spend lots of time on social media sites, as can get quite lonely if don’t go out on flare days, I have a beautiful toy poodle, which does help, as on good days it makes me go out and meet people when out walking. I do have low days too, I try to do something positive on those days if I can. Much love to all and prayers x

    • Reply
      kristine
      October 19 at 9:18 am

      Nice to meet you Diane! 🙂 How lovely to have such a good and understanding friend! I’m glad to hear you are trying to manage your pain as naturally as possible. It helps so much to have a good support system. Hope to chat again soon 😉 ♥

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