Ten things people say to people with Fibromyalgia

[vegito12]

I think it is shocking what others think of people who suffer from fibromyalgia as they assume the person does not look unwell and is just trying to get sympathy from others which has happened to some people I know, who suffer from this on a daily basis and every day is a challenge for these people which can be difficult at times. It can be sad and a surprise when the ones around us don't understand us and support us which can make it hard to tell anything to someone close if they don't understand us in the first place and even though more information is present people don't still understand, what a person with this conditon has to cope with and sometimes the journey is a lonely one when they don't have support. I have seen some people think that a persons body is the reason and don't bother to find out about the issues the person faces and should be more helpful and understand what the person goes through as some young people don't understand what a person suffers when they find things hard to do when for others it is easy.

 

[Ruralchick]

Though we all have gotten a snoot full of ignorant or spiteful things thrown at us it really helps to forgive them and just move on. (easy to say)
When my siblings and I were helping our mom clear out some things of my dad's we were stunned that the Parkinson's disease had caused my dad to loose his smile 10 years ago. There we were, for all those years, watching his decline but some things were so gradual--or more dramatic-- that we failed to notice the "smaller things" that trapped his body for so long. (He loved to joke and smile).

One of my sisters has also been dxed with fibro but for her, she is more functional--for now. The way she pushes and pushes there will be a time when she will fall flat on her face I'm afraid. She is the same one that told me to just work through migraines-though she never had one.

No one but God knows how hard we fight, how much we are disappointed in our body's inability to obey our commands, how very lonely this fight gets when our friends so often pass us over to move on with their own lives and we remain forcing ourselves to just get the dishes done!

I now often wonder how often our dad had to forgive us for being callous or mis- understanding him. He was unable to have discussions with us for a long time, and he never was one to explain himself.

We certainly all are more sensitive to others now!

 

[DK_engineer]

That's such a good point, Ruralchick. I can certainly look back and think of a situation where I didn't really understand what another person was going through simply because it was so far beyond my experience. I guess suffering can lead us to compassion. I just wish there was an easier way to get there

 

[Forgetmenot]

Ruralchick ,my dad has just found out he has Parkinson's . Some days life is crap.

 

[Terra203]

Maze43 believe this or not I had a brain tumor some years back and I did have someone comment on my weight. They said it had to do with the blood flow. So there are idiot people out there about everything

I have a very good friend that is OCD about dishes and all kinds of things but she is so understanding about me and all my pain and not being able to get things done. I have never been a neat person when it comes to my house. I've always believed life is worth living and they're not going to put it on my gravestone that I kept a clean house. LOL:-o I know what you mean about doing the laundry Chris tried to take the load down the basement in the morning and then put it in the dryer in the afternoon and then go down and bring it up in the evening. The fact that it's in the basement makes it even harder for me to do.

I tried to explain that it's my skin that hurts not the bone not the muscle but the skin nobody really understands. Because I have not yet really been diagnosed I'm going to ask is that all the rest of you feel? I found a list of 59 symptoms and I have 34 of them.

 

[terbaer]

Terra203, I don't know that my skin hurts, but I do know that for me, I don't like things to bind me. I am so uncomfortable these days with just wearing a bra and being dressed in even jeans. If I am, after about an hour or two, I'm anxious to get home to get into my pj bottoms and a t-shirt (bra off), and sweatshirt if I'm chilled. That's what I live in most days.

Off original topic, Ruralchick and Forgetmenot, I just saw something posted about Parkinson's and bike riding. I don't know if it's true, but Parkinson's patients were much improved when they road a bike. Something about it bringing the hand and mental coordination to ride, triggered a specific part of the brain that is affected by Parkinson's. Check it out, it might be helpful if your dad isn't beyond help in that area. My heart hurts for you both. My dad is still healthy. It would be so difficult to see such a strong person as him be afflicted with Parkinson's. Gentle hugs...

 

[Trellum]

Number two really gets to me, I find it so rude, even though I know my knees will feel better if I do lose weight, but I know it won'r solve all my problems I find it funny when a fat doctor tells me I am fat and I need to lose weight, I can't help to look at them and give them a: ''really?'' stare. I no longer care to explain anything to anyone though, I'm dealing with so much already. Oh and I know there will always people that are having it worse, but that doesn't make everyone feel better sometimes. But yeah... there are a lot people who talk without thinking and say that kind of things.

 

[KarenH]

My own parents say the worst things to me. Every symptom can be explained away according to them. They think I can work full time and still keep my apartment spic and span. When it doesn't happen and I tell them I don't feel well they "just don't understand". Or they've "never heard of that!" (When I explain a symptom or diagnosis). When they say that it means it doesn't happen or exist in their world. The most aggravating thing is my aunt (dads sister) has fibromyalgia and they're always talking about how bad off she is!! When she drives the 2 hours to their house my mom puts the heating blanket on high for when she arrives bc she knows she's going to be in pain. And they always schedule their outings so they can come home so my aunt can rest and put her feet up. I get so sick of hearing them go on and on about my aunt but yet I'm dealing with the same thing and they don't believe I have anything wrong!!!! (At one point I was working 7pm-7am three nights a week and they still expected me to be superwoman). UGH!!!!

 

[savsgirl66]

It's comments like these that make it easier to suck it up and pretend that everything is okay. I do appreciate the sweet people who get it. One coworker: "High pain day or low pain day?" Things like that.....

 

[diamond]

Friend who had been constantly trying to tell me what i should and shouldn't be trying to do...how to change my life etc 'asks me 'how did you sleep '.

To avoid getting into further negative discussion on my health as i had, as always, slept quite badly was in lots of pain felt awful etc so i say oh 'so so' which is english way of politely saying 'you know about the same' or I'm okish

The reply came in firm tones' What does that mean'? You slept really fantasically ....you slept pretty well or you had a terrible night!

 

[oportosanto]

Re: Ten things ppl say

I'm all of the above except for that's a women's disease.

I've also had

1) your just taking to many medications

2) get more exercise

3) and, I walked in on my in-laws telling my son I WAS JUST LAZY!!!

The ignorance that exists out there is insane, it's hard to believe people fail to believe how serious this disease is...

 

[woundedhealerwannabe]

I'm lucky to be exposed to people who don't treat me like that anymore. Some people used to be pretty cruel though.
1. I told you I want you to do X (and I told you I can't),
2. You're just anemic-- why don't you take iron already? (I do),
3. What's wrong with you? (I don't know, but I can't do anything about it),
4. You're too young to act this way (and I told you I can't do anything about it)
5. All you need is X (and I can't afford to try every cure-all that comes into fashion. Talk to me when the safety and effectiveness are proven and when it's on sale)

 

[diamond]

Oh woundedhealerwannabe your post made me sad and smile in equal measures because of your quips alongside each quote....that's just what its like!!!

 

[LornE1982]

I understand #5 above so well! I've gotten so many suggestions (to be fair, many through books and internet sources, not from unhelpful people) that all swear their idea is the cure all! Now if only I had unlimited time and money...

 

[savsgirl66]

This whole thread makes me feel a little better. I guess it's true that we prefer not to suffer alone - even if we wouldn't wish this on others. I know that some silence is due to not knowing what to say. I also know that some silence is due to not believing it's real. I am still new and wonder how so many of you handle this stuff for so many years. It's been just over 6 months and I get so frustrated. Like today....I was at the elevator trying to go to the 5th floor. Guy gets off of one and says, 'young lady the elevator isn't working' and walks away. Damn 5 flights of stairs!