Ten things people say to people with Fibromyalgia

[Forgetmenot]

Ten things ppl say to u when u have Fibro that really p u off.
1.you don't look ill.
2.if u lose some weight your feel better.
3.my mate has that and she work 40 hours a week in a gym.
4pull yourself together .
5 I won't catch it will I.
6.your just depressed.
7 ache and pains are apart of getting older.
8 there's ppl out there worse then you are
9 it's all in your head
10 it can't hurt that much.
I have heard most of these sadly .what about u.

 

[DK_engineer]

Re: Ten things ppl say

Let's see, I haven't been at this as long and may not have 10...

1. Small changes in diet can produce large changes in health
2. If you would just stop / start eating {fill in with a type of food} you wouldn't have fibromyalgia (a more direct version of #1)
3. I can't accept fibromyalgia
4. You've always been too sensitive
5. You are making this up to be manipulative
6. Try harder

 

[diamond]

Re: Ten things ppl say

Yep I've had most of those some with with slightly different words

1. If you just get going it will get better.

2. You have't tried hard enough.

3. It can't be that bad ...If you have a bath that will take the pain away.

4. Its not normal (in a derogatory tone of disbelief) to hurt that much going in the car.

5. You've always been too sensitive.

6. We all get aches and pains as we get older.

7. What do you eat? ( as if i don't eat enough or healthy enough).

8. I don't believe in fibromyalgia.

9. It's you're lifestyle ...you don't go out enough! ( If Only )

10. Just ignore it.

11. Are you going to worry about everything. (when a new horrible symptom starts that then becomes daily like migraines IBS loud tinnitus)

12. It won't hurt any more if you go out.

 

[diamond]

Re: Ten things ppl say

Just thinking..... all the above don't just p u off...they have upset me so much at times especially if i have been confiding in some one when the pain etc gets too much that reactions like any of the above have then contributed to lower mood and increase in pain and weakness.

If only they new how words can hurt....Literally!!

 

[DK_engineer]

Re: Ten things ppl say

So true, forgetmenot. The first two on my list don't bother me as much because they are well intentioned. The last four were all said by the same individual a few weeks after my diagnosis. Definitely set me back pain wise, which is irritating because he meant it to be hurtful.

My husband and I don't associate with this guy anymore, but he is still a close friend of my husband's best friend, so I may run into him in the future.

 

[Jordan]

Re: Ten things ppl say

1. You're too young to have fibro

2. I thought women only have fibro you're a guy?

3. You don't look it pain

4. You're young you can get through it.

5. I know how you feel, I have the same aches and pains

6. What even is fibromyalgia?

7. It's all in your head

8. Are you sure it's that?

9. We all have stress, Brain fog, anxiety etc...

10. It's probably not even that bad

 

[Forgetmenot]

Re: Ten things ppl say

Jordan ,I feel for u and any guy really. Because even though we have very ignorant women in the world and we all no one, being a man and having other men know u are in pain must be hell, men as a rule would prefer death then admit pain ,or God forbid go see a dr.
And one as young as u well it knocks your confidents with girls to.most guys like to think there looking after the girl not the other way round .x

 

[DK_engineer]

Re: Ten things ppl say

I used to work in a paper mill many years ago. One of the other foremen, an older man, came down with lupus. I remember he loudly joked he had a "woman's disease", probably to keep other people from making fun of him. The mill did not have a very sympathetic culture; he needed to carry on or people would be really nasty to him. It was a very physical job, and we were rotating to different shifts every week. I can only imagine how difficult it was for him to keep working as though nothing was wrong.

The the "tough culture" in the mill was what people needed to work those awful rotating shifts in a physically demanding high stress job. But there are a lot of situations where "tough culture" (sorry, can't think of a better thing to call it) just isn't helpful. Dealing with chronic illness is one of those situations.

 

[Forgetmenot]

Re: Ten things ppl say

DK ,I was sitting at a bus stop the other day when two old lady were looking at me like why are u sat don't.
Anyway we get on the bus and I sit at the front on the disabled seats.one of the two women stood I front of me to see if I would move. I knew what they were thinking . So I said very loud ,it's ok lady's I have a disabled bus pass would u like to see it,
The women said oh no it's ok we not need to see it ,and I thought ha .im fed up with this u look to well rubbish.

 

[diamond]

Re: Ten things ppl say

You shouldn't have to justify disabled passes or parking badges but sadly this is the world we live in.

I used to walk pretty often to my local newsagent but the door was mighty heavy. I used to hover outside and wait for some one who was going in or coming out and politely ask if they could hold the door open for me and simply said i had bad shoulders.

Because i don't look old or ill or have a stick some people would like raise eye brows while others were lovely and kind.

My worst experience was my local pharmacy has a bell on the door which is also very heavy for disabled people to ring to be let in.

I needed to collect a prescription and rang the bell feeling apprehensive. A horrible lady behind the counter kept looking at me but ignoring me outside. Eventually i rang it again ...i wasn't going to wrench my arm and shoulder.

She came with a look of thunder on her face....served me in a way that was abrupt at which point i tackled her explaining despite however I looked on the outside if I opened the door i would hurt myself for hours to come.

She reluctantly let me out but on future visits was a bit more pleasant.

I find its middle aged people that are the rudest...the elderly and young are generally sweet and understanding.

 

[maydaze43]

Re: Ten things ppl say

Lol thats great forgetmenot. And hello by the way That made me chuckle as it was only yesterday a family member told me losing some weight would help with the fibromyalgia. Funny how other people seem to be so obsessed with other peoples body shape isn't it ;-) you wouldn't say that to someone who had been brain damaged for what ever reason... It would be totally nonsensical. But from what i can gather so far about fibromyalgia is that it is exactly that...changes in various regions in the brain due to many factors..not that i believe in the dogma of science as we are whole beings but I'm sure it has its part to play. People are so stuck in their ideas and perceptions aren't they.

 

[Eyesup]

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!!!

 

[Dooi]

Re: Ten things ppl say

Oh my, that last one is just the epitome of rude.

It frustrates me when someone see's the aftermath of Fibromyalgia, the inability to be productive, move around without pain, be active all day, and then refers to that as the issue. I've been told to be more active, play more sports. Something I'd love to be doing more, but simply can't.

I wish there was more of an awareness campaign like there has been for things like depression and drugs these past years.

 

[terbaer]

Re: Ten things ppl say

Somehow I have attracted and had long-term OCD friends. Their homes look like Martha Stewart could have decorated them. One evening the girls were all sitting around the fire outside and I decided to try and educate my friends a little better because I had noticed that they didn't seem to "get it". One of my friends said, "Well just throw a load of laundry in each night and when it's done, fold it and put it away!". I repeated what I had originally said, "But sometimes just figuring out what needs to be done, whether it laundry, dishes, etc. even though it all needs to be done, is overwhelming. I don't have the energy to even do the laundry. My house isn't maintained. I can't keep up and can't figure out what to prioritize." She repeats, "It's not a big deal, just throw a load of laundry in each night, fold it and put it away." So I say, "But I don't always have the energy to even throw a load of laundry in!" We went round and round until I just gave up. Did I tell you they had been long-time friends? They've seen me decline. They have seen me not able to do things. Her OCD brain just couldn't grasp what I was saying... :-(

 

[diamond]

Re: Ten things ppl say

Yeah people cant grasp that simple tasks take huge effort and aren't always possible.

To be honest go back 10 years and i don't think i would have understood either!! We do hope/expect our nearest and dearest who have watched our decline and listened to our explanations and fears to have some understanding.