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MimiLisa posted:
I have been diagnosed with Chronic Fatigue Syndrome for 19 years and FM for the last 11. I am very upfront with people about my illnesses since you never know when the person you are speaking with isn't someone who has been looking for answers themselves and sees something in what you are describing. My problem is how to (nicely) stop the many friends and "helpful" strangers who know of some suppliment that helped someone they know or themselves and now they just happen to be selling it. I have tried many things over the years and I am at the point where I just have no more patience with this and have run out of things to say other than "take a hike!!" I have dealt with people I worked with, people from church, my moms, sisters, brothers etc friends and the above mentioned strangers. Any ideas?
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Caprice_WebMD_Staff responded:
Hi MimiLisa,

What a great question!

You're not alone in dealing with this but it sounds like you're pretty inundated.

My approach has been to thank them for their interest and suggestion as most of the time it comes from a very sincere place. And you never know, what they suggest may help. But my radar is on the alert if they're selling a product.

If they are more insistent, I tell them I'll note it down and do my own research and - if they're selling - will get back to them. And if they get too pushy I've even told them I've already tried something and it didn't work (if that's true) or tell them all the research I'm aware of that disputes what they're insisting upon. Between having had FM for a couple of decades and working on WebMD and reading all studies here and other health sites, I have a pretty good idea of what's legit or not (not that those selling snake oil will believe it but I don't need them to).

I look forward to reading what others have to say.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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MimiLisa replied to Caprice_WebMD_Staff's response:
Thanks for your input Caprice! I was a nurse for 2 1/2 years when diagnosed with CFS and then worked until '06. I also have done a lot of research and tried SO many things over the years. I think what made me ask the question is a very insistent person who wants me to try Nopalea (is selling it). I have tried politely and not so politely to explain that I have an allergy to the agave cactus that I discovered with a margarita in my 20's. I am still getting info by e-mail and mail. Have junk filed the e-mail and throw everything away but I just feel stressed (a major FM trigger for me) just seeing these things in the mail. Don't want to lose a friend, since there aren't that many of those around anymore so I'm stuck. I am also looking forward to other ideas.
 
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Caprice_WebMD_Staff replied to MimiLisa's response:
I think you have a right to say 'no', even to a friend, and have that 'no' accepted. She's the one who is out of line by being so insistent.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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angelswife responded:
Hi MimiLisa,

I have not told too many people about my Fibro for that very reason. The few I have told, outside of my husband, have been very quick to come up with a "cure". (Don't I wish!!) The one that really turned my head around was the friend who, when I told her about the Fibro, answered, "Oh, that's just arthritis. All you have to do is take steroids for three years and you'll be cured." Sure, and I'll have sky-high blood sugar, weigh seventeen hundred pounds and need a double hip replacement from the avascular necrosis. NO THANKS!

I understand completely about saying take a hike. I certainly felt like saying it that day...Usually, though, when someone suggests something, I will say I'll look into it and leave it at that. But, as I said earlier. most people don't know about the Fibro in the first place.
 
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xperky responded:
I've had mixed experiences with advice.

One relative said dismissively "can't you just take some vitamins for that?" Grrhh

A friend came up to me a few weeks after telling her about my FM. She was smiling and said she has been trying this remedy for her arthritis pain and that I might find it helpful too. I hugged her and thanked her for thinking of me. I said I'd look into it and the cost, etc. She was not pushy, just sincere.

I understand about receiving too much pushing. I guess I'd say something about having a treatment plan and giving new herbs a few weeks before deciding, so my current plans are full, but I'd keep her suggestion in mind at another time. Smile and thank her for trying to help.

You are right - friends and people who care are precious.

Margaret
Life is wonderful when lived with love and compassion, Margaret
 
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maryfibro24yrs replied to xperky's response:
Great topic! I've had all of that and then some as well to the point that my eyes start to glaze over or my smiley lips stick to my then dry teeth!
I've even quit church b/c every one I've gone to (and that's been a lot) has always intoned that if I just repent and forgive then I'll be "set free" and feel better. Even my dear husband (no I haven't forgotten the red color and blind man theory, however.....) if he sees even the tiniest bit of improvement he goes apesh-- wild with glee and says "see you ARE getting better....."
Probably the #1 reason I have made serious strides to withdraw from people and have actually found that some of my most blissful moments are sitting in my lounger in front of the baywindow and people watching! It serves a two-fold purpose, I "see people" but don't "have to" get better! Even recently I mentioned to my sister who really ought to have known better that my feet hurt a lot! So she suggests these great insoles that her son in law personal trainer recommended for her and how much better her feet feel now! Like the chronic hopeful I still can be, I got them! Really bad idea! I now can't wear the sneakers and my feet still hurt!
One of these days I'll finally feel free to speak up for myself! OR completely ignore everyone and just smile serenely and do what I have to do to be ok for that moment!
 
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kitINstLOUIS responded:
I've had friends selling chlorophyl products, supplements or "super juices" swear that their products would actually cure ANY disease. A little bit of psuedo-science and the writings of hucksters actually convinced them of this fact. Yes, it created rifts in my relationship with them whether I tried to extract myself from the conversation or proved them wrong by using logic and science. I definitely don't recommend the latter, it will make you crazy; salespeople are trained to have an answer for every response, and some are pretty wacky (scientifically speaking).

My suggestion is to to smile in a detached way without investing emotionally in their argument. Tell your friend that you appreciate their concern, but that you'd prefer to remain on your current regimen for now.

Deliver your statement in a firm way and change the subject. Yes, it does help to have this answer ready when they come at you. If they don't take the hint you'll have to shut them down more firmly: "Look, thanks so much for your concern, I truly believe you have my best interest at heart, but I have enough on my plate right now, please give me a break."

You gave them the chance to back off gracefully, and they refused. YOU are the one under stress with chronic pain, it isn't out of line to remind them of that.

Best of luck.
 
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ms_hurts_alot replied to maryfibro24yrs's response:
I have recently been dx with fibromyalgia and a few other things. I have been suffering with pain for about 10 years. I finally went to the doctor and complained that my aches and pains may be more than just getting older. I am in the midst of doing all kinds of research on the subject for I have found out that many people in my family and a few friends also suffer from this. I was one of those people who would try to help others with their conditons. WebMD is one of my favorate websites to reference. I related to many because I too suffered from pain. On facebook there are support groups that I belong to which have been helpful for me. Even if it's a day when I just need to vent, people in these groups understand! It helps me because I also have one of those husbands who tries so hard to help me and it can be good at times but sometimes I just want to be alone until the pain lessens for the fibro is not the only thing that I have to DEAL with. So if you think it may help you, try some support groups. I've made some very nice connections with people in the groups on facebook. It just feels good to talk to people who identify with your suffering.
 
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trskempf responded:
Say thank you for thinking of me and then tell them you will keep their suggestion in mind but that you are working with you doctor and other healthcare providers as to what is the best treatment is for me. Usually this does the trick for me unless they are trying to sell you something then you need to just be firm and say no, I am not interested and do not ask me or bring up any suggestions to me again.
 
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TheresaInMexico replied to trskempf's response:
I live in an active retirement community in Ajijic, Mexico, with several hundred Americans and Canadians, i.e., English speaking. I try to gently let "helpful" people know that when a genuine cure for FM comes along the discoverer will most likely win the Nobel Prize, and I'm waiting for that event before trying anything new.
 
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Caprice_WebMD_Staff replied to TheresaInMexico's response:
  • giggle* I like your response, Theresa.

    In fact, I love all these responses... some great ideas here!

    Welcome to all of you who are new to WwebMD. Should you wish to start your own discussion to say hello to the community and/or ask your own questions, hold your cursor over the orange Post Now button and choose 'Discussion' from the drop down menu which appears. Fill in the subject line and body of the message (you can ignore the poll part if you want) and Submit.
    We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
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    Pixe5 responded:
    Actually I have gotten some good advice from someone who suggested that I might have sleep apnea. And it wasn't from a doctor!

    I do get impatient with some people though because I feel like they are belittling my experience with fibro. The most common "suggestion" I get is to exercise. These people think that they know what fatigue is and swear by it. Or I get from people that I sleep too much and I would feel better if I didn't. I want to tell people that it isn't that simple! I wish it was! Anyway I just grin and bear it because I know that they are only trying to be helpful.

    I think some people don't realize that this illness is simply out of their frame of reference. If they have never had it then they shouldn't treat me like an idiot by comparing their minor problems with mine. When I say that I am tired I don't mean a little tired. I mean flat out exhausted to the point that I can barely do anything! If I say that I hurt they should not compare it to their strained back!

    So all I can say is that while I don't necessarily mind suggestions they could at least realize that simplistic solutions won't work. There is an implication from the suggestions of exercise and sleeping less that somehow I am lazy.

    Pixie
     
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    crhrjhimh responded:
    Dear MimiLisa:
    I read your post and I had to respond. I have fibro, OA, asthma, sleep apnea, high cholesterol, chronic back pain, yah dah, yah dah, yah dah. I'm guessing that you can see why my pharmacy loves me. Anyway, I think people sometimes have this need to "help" others. They see your pain or your condition, and they feel like they need to do or say something to help, or if you tried just one more thing, all would be better.
    There are a few things I say when the suggestions become insistent.
    First, I thank them for thinking of me, then I tell them I have to check with my doctor first, but would they pick me up a bottle of "whatever it happens to be" so I could try their recommendation.
    If that doesn't work, I start listing all the things I have tried, including medications, therapy, alternative treatments, accommodations, etc., and they usually get that glassy-eyed look and change the subject.
    If that doesn't work, I smile and nod and say I'll be sure to let my doctors know that, despite all their education and experience, I met someone who knows much more about my illnesses and perhaps I could arrange a meeting so their knowledge can be shared with my physicians.
    You can walk away from strangers, but you can't walk away from family, friends, or church. Come up with a summary of symptoms, diagnosis, treatment, etc., and share it with them. If you get even half of them to read and understand, you're farther ahead than you were yesterday. Invite them to come with you to a support group - they'd probably be surprised at the broad range of people affected.
    Good luck with your condition, and live one day at a time, to its fullest, even if that's snoozing all day.
     
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    HealingArtbyJuliaKHarwood replied to maryfibro24yrs's response:
    Hi, I know how you feel I have had the same experience with church. One thing I have realized is that God and the church are two completely separate entities. I still have a wonderful relationship with God and couldn't deal with this illness without him but I don't go to church or follow any religion. I have a blog called "healing Art" http://juliaharwood.blogspot.com where I talk about the healing power of nature. So I think it's fantastic that you can sit & look out your window. Sometimes people need this as much as their other treatments. If you would like to connect I am on Fb, there is a link on my blog or just search Fb for me. Regards Julia


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