Fibromyalgia Community

Response to telling people I have FM has in general been positive and they have been sympathetic, but unless I have had a string of sleepless nights, or I'm in so much pain I'm doing what I call the crab scrabble to get around, I don't look sick. I occasionally get a sort of screwed up face look like someone's trying to figure me out.
People say things like...you need to get up and get out! Or...I have I pains too!...Or you need to take more-fill in the vitamin or vegetable of the moment.
You can't show someone an x-ray of your Fibromyalgia!
This forum has been a great help to me because I KNOW I'm not making it up and so many of you have the same symptoms and that proves it-at least to me.
Thanks for sharing with me!

Hello....MiMi in NC....most of the time people can not/do not understand this very mean and ugly illness that we all have to deal with....heck...there are days when I do not even understand it....and then the fact that, for the most part, we FMers...do not "look sick"....well...that makes it even harder for anyone to understand...I try not to even explain it anymore...as I know people just have no idea....

When I first got sick....and tried to tell people what I had...most of them never even heard about it...and to be honest with you....neither had I ....it was so very strange....as I was going to physical therapy when the person who was helping me....talked to me about it...she told me that she thought that I might have it....just by the discussions that we had...at the time...I had no idea what she was talking about...

And then as I looked it up and started learning about this...I knew that this was how I felt so much of the time...not being able to "control" it completely bothered me for a long time...I would be so darn tired...and thought that if I could just sleep and rest....then this would go away...but this is NOT the case...being tired is not a good feeling for any of us...I continue to try different things....hoping to find something that will help....

I do think that the "Fibro Response" has helped me some...but just how what I had hoped for....It is still yet too early though for me to decide...so I will continue on with this...to see if I am going to feel a difference...

If someone asks me something about me anymore....I just say that today has not been a good one for me...but I am sure it will get better...and move on....explaining how the wrath of the dragon works....often does not help them understand any better...so I do not bother...

I do hope that eventually there will be more awareness of FM....for everyone to learn about...and I certainly hope that the medical researchers will eventually find something that will help us cope better....especially the fatigue...

Take care and good luck...


MiMi

I have never felt or considered myself disabled, even though in some people's eyes I have a "legitimate" physical disability along with the Fibro. But it can sometimes be frustrating to have an "I feel like roadkill" day and have people telling me how great I look. I can't tell the person how I'm feeling after a compliment like that, can I?

I have a landscaping business, so I am outside all the time from April through November. I get a killer tan and look obnoxiously healthy, so most people would not believe it if I told them how yucky I sometimes feel. The majority of my clients (I have 24) don't know about the Fibro either---if I'm having a really bad day I say I have a migraine. They can usually understand that.

The only real skepticism, sad to say, comes from some members of my immediate family. My friends have been very understanding, especially after I've explained what Fibro is and what it can do. They know what it means when I say I'm not having a good day, even though they will never fully "get" (thank goodness) what's going on.

Hi gridly1, Linda R. here and I've had the fibro DX for over 30 years and if you hope that people will understand the kind of illness you have you'll always be DISAPOINTED and HURT that they don't. So just accept that NO ONE who doesn't have fibro will understand what it does to a person who has it. It's like trying to teach/ show a blind man what the color red looks like.

You don't mention how long you've had the fibro DX. All of us here on the board/ in the fibro FMily know it takes years for those who do not suffer with fibro to get a 'understanding' on how it effects YOU. Fibro is a mean, nasty illness, collection of conditions that effect everyone differently YET THE SAME. So you may see some of us not dealing a flare on fibro DX well and others have just grown a thick skin and do what works for each flare up.

And having said that you seem to be dealing with the way fibro has altered your life. Fibro can't disable you, it can slow you down to a slow walk some days, even want to make you go to bed with a heating pad, ( and some days I have ) but it can't disable you. It can't make you unable to get up each day. Part of what fibro does is effect the mind.. and really for us it's mind over illness.

Most of us here will share with you just about the same story about a once active life, before the fibro DX, a life so busy they had to stop and catch a breath. Stories about days once so busy that they barely had a moment left in it to fit anything else in. Running, dancing, hiking, all kinds of sport activity. Wonderful days, wonderful times.

That was what my life once looked like.. now it's a bit slower, less active, no mountain climbing now, days with not so many things in it.. but it's still my life and it's being taken one day at a time MY WAY! I haven't changed all that much.. I'm just doing things differently.

And like others here have posted: Use terms that those who do not have fibro know and can understand. If you tummy is not feeling well, IBS symptoms: You have a flu bug. If your achy and have pain: You are coming down with a bad cold, maybe.

If you are tired and just feel awful: You over did cleaning the yard, the house, the attic. Use terms that are closet to how you feel that you know those who don't have fibro may have had and understand how awful it can make them feel.

It doesn't matter what those on the outside of your life think or see. It just matters What You Think and See. You can make each day just as you want it, fibro can't control that. You can make 'adjustments' when a flare hits, fibro can't stop you for doing things you'd like to, but you may do them more slowly.. Here we know it's all about pacing.. pace and pace again.


I hope this has helped some.. getting our minds in a good place, knowing we can over come fibro and it's collection of conditions is the first step in getting over having it and getting on with the life we want to have, be it a bit adjusted or tweaked.

YES! I'm almost embarrassed to go places (like stores) looking/feeling well after I've been there while I was in pain. I'm lucky that I have mostly pretty good days with low pain, and it hits me hard when the dragon rears its ugly head.

I tell people who challenge me (and there are those who do) that FM is a relapsing and remitting condition - I have good days and bad days. A good day means I can function on an almost normal level, but bad days I feel like I need a wheelchair.
Lou

PS - sorry if this posts a bunch of times. The "Submit" button hasn't been behaving for me lately!

I feel embarrassed every time I tell someone I have FM because I usually do look very normal to them. They can't feel what I'm feeling. I'll call my mom and she'll say, "you sound great today." I don't want to respond by telling her that actually I hurt a lot. I just let her think I'm fine. I prefer not to complain to people and I am well aware they don't understand why I have filed for disability. I try to remember that I don't have to explain myself to others. It's their privilege to know anything about me, not my responsibility to tell them.

Most times when I tell someone I have FM I get a response like, my mom (or whoever) has that and she has a hard time at her job or they tell me that they've learned to manage it. Other people respond by going into their daily ailments. Every time this happens I feel as though they think I'm over reacting and I just need to get off my butt and do something about it. I'm sure many of you can relate.

Wow, yes relate. I hide much from my hubby. I'll go in the bathroom or my room and cry and when I am done I come out. I am also going to apply for disability. I can do house work a little at a time, but there is no way that I can work anymore. I tried part time 12 hours a week and can't do that.
I hope and pray that you get approved.
We tend to become great actresses and actors.
Take care

The only problem is the lie is real and a big part of your life. You can't let what other people think about what you are doing for yourself to deal with FM stop you from living the life you have been given. People who don't experience FM have no idea what it entails or what kinds of day-to-day decisions you have to make to help your body and mind deal with the illness. Ignore the looks as best you can and, if you get a chance to pass on some information, do so with the knowledge that people will only accept what they can wrap their minds around and FM is one of the elusive things that is difficult for anyone not going through it to understand. The ones of us who are living with the "little monster" have a hard time understanding it sometimes.

I totally understand how you feel. I am quite over-weight and struggling to lose any of it because of the meds that I am on (and added 30 lbs grr) and the FM. I have a seated wheeled walker that I use now which is great when I am not having a flare and have had good rest so I use that in the grocery when I can, but for walmart or any larger store I have to use the electric shopping cart thingy (no idea what its called) and I always wonder if people just think I am just too fat to shop and lazy to walk around or what.
I sometimes wish people could just look at you and know that today on the hospitals little pain scale you are at a 18 and you live every day at like an 8 - 10 on their little scale.
(ok rant over).

Hello Gridly1!
I felt compelled to respond to your post as I had a personal
experience a long time ago which infuriates me to this day..
I am now disabled, but this was a few years ago when I was still working. I have FM, Myotonic muscular dystrophy, and inflammatory arthritis. (MMD is a common form of MD in which there is progressive muscle weakness, usually in the arms and legs) I am 5'8" tall and of normal weight. I look 10 yrs younger than my age of 44. In fact, I look like the healthiest person in the world! (But don't ask me to get up from a low chair or stand uup after kneeling...) I was in the office, wearing heels (as I was still in denial.) I went to the restroom and had to use the handicapped stall because I need the bars to stand up. When I was washing my hands a girl looked at me and snapped, "You don't look handicapped to me!" If I could have I would have leaped over the sink and strangled her... I couldn't even respond. I just stood there, shocked.
I probably should have said something, but I couldn't. That really felt like a slap in the face. I know all to well what you mean. I now have handicapped plates which somedays, I am too embarassed to use. Most of the time, I chalk it up to the ignorance of others and go on with my day.
Sending good thoughts your way!

YES, next time say something.

she was just being rude!

I can understand not finding any words for her comment. How about in the future something like..."well thank you for the complement!" That ought to be confusing enough for the judgemental one. lol.

I have found this is more my imagination than anything. If you wish to, you could tell them you have FMS and some days are worse than others. How far you wish to go in explaining things to them is up to you and how you feel at that moment in time.

I have only once gotten into that explanation with a person who questioned my use of a disabled parking spot. The only time in 15 years, I might add. I finally told him to call the DMV if he questioned my need of a placard. He was in a wheelchair, so I am sure he felt he was more in need that I was. My personal choice, which I pointed out to him, was that if there was only one disabled parking spot, I would not use it. There were 3-4 all in a line in front of the store that day, and all empty.

Otherwise, it is none of their business, you get to explain as much as you wish to.

Take care, Annette

I used to be the person that would give the disapproving looks. I never had the nerve to say anything, but I'm sure my stare was noticed and made some feel awful.

Honestly, this was due to my ignorance. I had no clue what some folks had to deal with until my own challenges began. Also how some folks can look very healthy even while dealing with some incredible disabilities.

Now when I feel the 'glare' or feel someone coming up too close behind me becuase I am walking so slowly, I try to feel sorry for THEM. They have such a narrow view of the world (as I did) that they are missing out on so much of what life is truly about.

Sometimes I do wish ill to these folks, that one day they will have to deal with some sort of temporary disability so they will learn compasison, but for the most part I consider them naive. They simply lack the life experience to even have the ability to understand.