Well-meaning but Misguided Advice Comes with the Territory

Well-meaning but Misguided Advice Comes with the Territory

Through the Fog

Isn’t it amazing the things people say when they find out that you have fibromyalgia? They probably know little to nothing about it, and yet they are very free with their advice. Have you had that happen to you? I’m fairly certain you have, and I’d love it if you’d share your experiences in the comments section.

Have you ever had someone tell you that you’d feel better if you exercised more? For some people, that may be true to a point, but for people like me who experience post-exertional malaise, that’s not good advice. Pushing yourself to do workouts may backfire, as you may find yourself in bed for several days trying to recuperate.

Eat better, feel better

How about this one: If you just ate healthier, you’d get better. Now don’t get me wrong, I’m all for eating as healthy as you can afford to, but it’s not going to cure you or keep you from experiencing pain and other symptoms. You may experience them to a lesser degree, but then again, you may not.

Get out there!

I’ve had people tell me that if I just got out more, I’d feel better. There are times that’s true, but what they don’t understand is that we have to weigh every choice and be certain that we’re willing to pay the price.

When my son got married a couple of months ago, I had a 90-minute round-trip drive and was only able to stay for a couple of hours. My son understood. I did pay the price for the next three days. I knew I would, but it was certainly worth the cost.

Just get more sleep

Another one: If you only got enough sleep, you’d feel better. I know we all wish that were true. For me, personally, it doesn’t matter if I get four hours or 10 hours of sleep, I feel just as fatigued when I wake up. Refreshing sleep is a much-coveted commodity among those of us with fibromyalgia. If you suffer from painsomnia, my heart goes out to to you. While I’ve experienced that a few times, it’s not my norm.

All we can really do is smile and say thank you when someone makes a suggestion that they believe will help. If it’s someone really close to you, just explain why that won’t work for you, but that you’re so thankful that they care. How do you handle unsolicited advice?

***

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

33 comments

  1. Julie says:

    Trust me, I’ve heard all of them, too, and have worked hard to keep moving. I eat cleaner and do exercise. I’m glad it’s a part of my life and basically, always was. But other than improving my overall health, it hasn’t to date helped with everything Fibromyalgia. However, I will keep moving toward goals inch by inch and at my pace. I agree we pick and choose what we can handle. Sadly, we don’t always know how much we can handle with activities. Evidently, presenting and singing at church and going to a Suns Local ball game was too much. But both were worth every minute. (Note: the day before, I helped my husband grocery shop but rested all afternoon/evening). Despite extra rest and a lot of deeper sleep, I’ve yet to overcome the aftermath of feeling ‘off’–sluggish and filled with overall fatigue. I fight fatigue in other health problems, too. Often, it’s like I’m going upstream without a paddle or my sprinkling can has a hundred holes. Frustrating indeed. Easy, no. However, I still get to choose if it’s worth perhaps a full week of recovery. For that, I am grateful. I’m finding it very challenging to age with so many chronic illnesses and everything seems to be linked somehow but no help available–yet. Hanging on to hope knowing my body is temporal but my spirit is not.

      • Julie says:

        For me, I’m finding out my blood pressure medicine is not good for me and can be the culprit. I’m simply being a guinea pig with researching tons and adding what makes sense to me. Asking God for continued wisdom and favor. I know I need a miracle but He granted thorough healing for the incest so I believe He can make my life better day by day physically. I am trusting Him no matter what and always. He can be trusted. Took me 20+ years to get to this place.

  2. Mary Carrazza says:

    Yes – to all of the above Robin! It’s my direct family “who only want the best for me & just want me to be more proactive in getting well”!!! They are all very active and they blame my inactivity, diet, poor sleep patterns etc for the fibromyalgia. I have given up sending them information or links to studies. I shut down when they get started – because otherwise it is too distressing. But I am fortunate in that my life long friends & extended family are totally loving caring & supportive.

      • Brenda Stapleton says:

        I hear you Mary. It’s like my biggest support network is also my worst enemy. Unfortunately, I don’t have the extended family or friends in my corner. Their busy lives and the close family have driven them away. It’s definitely hurtful, but it’s also the one thing that keeps me looking to get better- for ME.

  3. Grace from Australia says:

    I so agree and I keep reminding myself that people mean well but have no idea! Like more sleep; yea….if I only could. Right now I am in a habit of waking up after maybe 2 hours sleep and not sleeping again until 6 or sometimes 8 o’clock. This is while using sleeping tablets. At least I get a lot of reading done during the night. I am a really great customer of our local library. 🙂

  4. Lisa says:

    I’ve experienced having a person WITH Fibro tell me that I should treat mine in the same way that she treats hers. This advice came to me because I have recently had two unusually difficult weeks. I was surprised that someone with Fibro would insist that what works for her will work for me and that her advice included to stop taking my prescriptions and to change over to what is working for her. I know that she is well meaning and I know that her way works very well for her, but it felt a little like someone trying to talk me into a multi-level marking deal. You know the feeling, you’re happy that it works for them but you aren’t ready to toss aside your steady income to join an MLM company.
    So I guess it isn’t always people who don’t know the disease that insist that they know better for you than you and your doctor.

    • Robin Dix says:

      Good point Lisa! I really don’t like it when people find something that works well for them and thinks everyone else should do the same thing. As we all know, what works for some definitely doesn’t work for all.

    • Erica says:

      Lisa,

      I know what you mean. I’ve been told by a person with Fibro that even if I do not feel like leaving the house, I should do it any way. She said “that’s the begining. soon you will have an excuse for everything. you’ll stop being a good friend and lose everything”. I was thinking…I do not have the life that you have. I am the sole income provider in my family. I get up every day at 5, travel 2-3 hours round-trip to work, work 9 hours, come home to 4 kids, do homework (I’m working on my degree), try to maintain my relationship with my husband, and my Lord! She works part-time and her husband has a well paying job. She only has 2 kids and they are both in their teens. It is just a different life. In order to keep up, I’m going to have to sleep in sometimes on Saturdays (which, by the way, is only till about 7) or not attend every social function I’m invited to. I know she meant well. I just think she does not see the difference in our lives.

  5. Oh yeh…I know them all.
    Esspecialy my parents say servel comments everytime I see them.
    My daughter and I have both Fibromialgia and I understand they want to heal us….but It’s verry painfull.
    I really want them to be proud at us, proud at our strenght…
    The way the give advice gives me the feeling I deal the wrong way with my dissease…that they know better…
    It makes me insecure…
    (i’m from holland so I hope you can understand my englisch hahahaha)
    I’ve got a site on facebook, in dutch, for people who have fibromyalgia.
    Those people can give me what I need, love, respect, support…
    The things I miss by my parents…

  6. Vickie says:

    People who give “advice” such as this make us feel like this horrible affliction is OUR FAULT! I actually had one coworker, who upon hearing I had been diagnosed with Fibro, said “Oh, I think I have a bit of that.” I replied, “Is that like sort of being pregnant?”

  7. Ann Flynn says:

    Hi Robin once again excellent post.. I am very lucky my amazing Son’s are so supportive and take the time to read up and try to understand Fibromyalgia and which symptoms relate to me personally.. I am also lucky to have support from extended family and friends. However I still feel people don’t understand why I can push myself when it comes to really important family occasions (although not always possible) example we have just attended my Nephews wedding and I increased my Pregablin, with my Doctor’s consent…. I was able to stay the whole day on adrenaline… Yes I am now suffering the pain and the fatigue and bed is my solice for the next few days or even a week. People will judge me and say you looked great and you kept going all day and night! That’s what we Fibro warriors try and do.. It’s not always possible and I know I will be unfairly judged if I have to miss other functions… But I vow to keep go if and when I can because this horrible invisible illnesses isn’t going away!

  8. Linda says:

    Oh Vickie you are so funny I agree people don’t understand as they physically cant see what is wrong with us.. Like FM is not real if they can’t see it.. My son’s Mother in law has FM also and no one believes her Its kind of sad some times but I can stand up for her and we get along well. We have a common ground to stand one and we understand each other.. Its good to support her when we get together for family functions. For the first time I noticed that lately when I walk my legs feel like concrete What is this all about. I;ve never felt that before and personally I may be active at times but I make sure I rest and slow down too. Its a balance that is hard to find.. Either too much or too little. A no win situation at times Our parish has a Healing mass once a month and I attend that. With prayers and anointing of oil I believe God can heal One step at a time. HE is in the business of miracles. But my heart goes out to you all and I will pray for each one of you as well.. I add them to our prayer list and mine Don’t worry confidentiality is a must Just healing for those who have FM nothing more said. But I love the support here and its very important.. We know we have it and in the end does it matter what anyone thinks I can look back on my bad days knowing I am not alone as I think of all of you perservering so I will alsp perservere.. Thanks to all of you We have each other to lean on and we understand each other. To me that’s important and will carry me in the difficult days!! God Bless you all

  9. Denise Bault says:

    Eating well and exercising does seem to lessen some symptoms. I’ve yet to find a cure…along with the rest of the world!

  10. Penny Redinger says:

    Yeah my daughter doesn’t understand she just says feel better. And there are those days you do and days you don’t. And my boss really doesn’t understand at all, I’ve even went home in tears with such severe pain. And yes I’ve heard it all as well, the exercise, changing your eating habits and yes I’ve tried them all.

  11. Mary Ann Chase says:

    Things are too difficult to explain. My daughters do try to understand and my oldest son who is now 50 and, I believe, has multiple sensitivities but is a busy research computer scientist, so I understand why he can’t always be at family functions. I appreciate so much when he comes here with one or both sons from an hour or so away to play golf early with his dad who has Parkinson’s. That’s the only time husband gets to play. It’s too hot now tho. I feel that life has pulled the rug out from under me. I’ve had Fibro/Cfs for well over 20 years, plus battling depression, and more recently diabetes which I hesitate to mention to anyone. I am not active anymore at seventy three so it is all age related to people and why I use a can for balance. Dr. discovered two years ago that I have active cronic Epstein Barr virus which could be a clue to Fibro etc. It is not going dormant with rest tho….and no stress! Ha. We joyfully had 5 kids plus fostered 2 Viet. refugee boys. Then I used to babysit every workday for four of grandkids, sometimes for two others, then regularly for two others. All from different kids. Then took care of oldest daughters husband and three little girls, having to move to another state, before and after she died of cancer at 41. My husband took early retirement for that….maybe caused his Parkinsons and my Epstein Barr. Who knows? Who knows why my IPAD won’t print numbers sometimes. It’s too complicated. Everything is.

  12. Linda Reed says:

    This article is VERY true! It’s obviously from a lack of understanding exactly what Fibromyalgia is, and how it manifests itself in each individual. I, honestly, believe I have EVERY issue there is with Fibromyalgia!! When I was in the workforce, I actually had someone say to me, “what isn’t wrong with you?” I SAW FIRE AND WAS ON THE VERGE OF STRIKING BACK after that was said, but held my tongue, prayed, and tried to understand it was ignorance! That was probably one of the most, insensitive, hurtful comments I’ve gotten. I’ve also heard all of the typical comments such as, DRINK MORE WATER 🙄, get out, and exercise, keep moving, try swimming, eat healthier, well my sister has Fibro and she doesn’t let it stop her from doing everything she’s always done, or, well my mom has it, but she doesn’t have that problem 🙄….. Hello?? Your mother is not me, and Fibro is different for each individual who suffers with it!! Why don’t people just still their tongues when they are uneducated on the subject matter??!!!!🤔

    • Grace from Australia says:

      Linda, I also feel that I have so much wrong with me (apart from everything to do with FM, I have also other issues), that I feel I cannot tell people as they will not believe it. Like in church they just say I have a bad back. If only they knew how much else is bad. 🙂

      • Linda Reed says:

        I’m so sorry Grace….. I do know how you feel!! I, too, have gotten to the point where I don’t share with people of other illness either for the same reason, and because they just won’t understand.. In addition to Fibro, I also suffer with severe Rheumatoid arthritis in EVERY joint of my body!! That pain is far worse than the Fibro on me. When the both flare at the same time, as it did yesterday, I’m in extremely severe, off the chart, pain!! UGH…. Hang in there, Grace, and take it a day at a time!!

  13. V J Knutson says:

    A massage therapist recently told me I need more cumin in my diet. I tried not to laugh out loud, and managed an “that’s interesting “. Really?! I’ve been incapacitated for years and just need more spice?

  14. James milne says:

    Hi all,
    The problems I have had is with self help products I am a sucker for buying into them, here is what I have learned, some of the products have HELPED that’s it there is no majical cure that some of them self claimed gurus claim, they only HELP, that is what healing means helping not curing, if your symptoms are all in your head well fair enough you will heal and get better, the problems is that when I end up in hospital or see my local doctor they find it hard to take me seriously as I look so good and very laid back, I have even had nurses make sarky comments as in there is nothing wrong with me and make me feel as if I am making it all up, so it has been very difficult, and now my doctor thinks I might have parkinsons disease, which for me should have been picked up a long time ago, the other problem I have had is that admitting that I look up symptoms I get on the internet and then they start thinking that I am making symptoms up, I got this from my last doctor as she checked if I had actually looked up parkinsons on the net which I hadn’t and actually came as a shock. The best advice I could give is yes take up meditation as it does help and just be in acceptance of how you feel, it is not easy but practice makes near perfect in our case. I have also stopped buying into this Vitamin carry on there is no vitamins that can cure F/M NONE I know I have tried them all which made a big dent in my pocket financially. So there you go that’s my journey and I sincerely hope my input has helped someone.

    Love peace and many blessings, James

Leave a Comment

Your email address will not be published. Required fields are marked *