HealingWell
Search Close Search
☰

"but you don't look sick!"

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/21/2009 10:48 PM (GMT 0)
What does a sick/disabled person really look like? Unless you have a prop like a walker, scooter, crutches, or cane, or you are missing a limb, you look just like everyone else.

You walk into support group meetings for most diseases/disabling conditions and everyone looks rather normal. You couldn't pick them out of a disability lineup.

When I am really flaring, I look pale and drawn. I don't walk with my usual bounce. People that know me can see it right away but if we just met on the street, you wouldn't know. I look at the people in my fibro support group and they are all beautiful, clean, well dressed people that look like they wandered in from the mall. Your average person wouldn't be able to notice that this is probably their only social outing for the day, maybe even the weekend, and the stress of getting presentable will probably last for a few days.

I think we need better public relations. We need to hang up posters with our pictures on them saying "This is what a disabled person looks like." We need commercials showing that disability doesn't have a special look. Maybe we can all have special hats or forehead tattoos.

I say we start a nationwide movement today. I prefer the forehead tattoo because I'd always be forgetting to wear my hat but I rarely forget my head, but that's just me.
Posted 2/21/2009 11:59 PM (GMT 0)
I am all for better public relations. I have had friends and neighbours comment "you look out of it", or "ÿou look really tired" when I slept well the previous niight. I have bags under my eyes like suitcases. Black shadows. Sometimes I'm scared to look someone directly in the face b/c I have trouble focusing. They see my funny eyes and think I'm high. They see my unsteady gait and think I'm drunk. I am so tired of explaining. If I say Fibromyalgia, I might as well say I have jiggabobs disease. They have no clue. Forgive me, now I say, i have a disease like Lupus. That most people understand.
Posted 2/22/2009 12:25 AM (GMT 0)
I am for it and think that would be a good idea. the forehead tattoo why not, well it would just give people another reason to look at us funny and our made up illness that people only say when they are lazy and dont want to get out of bed. ohhh how i hate that comment. saying i have a disease like lupus i have never thought of that one. i can see it now in bright neon fibro day, have you hugged your fibro person todaAY? what about t-shirts?
Posted 2/22/2009 12:37 AM (GMT 0)
I can't agree more, Dagger!!
Posted 2/22/2009 1:08 AM (GMT 0)
I know it's a little white lie and I hate doing it. Lupus folk, please forgive me. It does make the conversation much shorter. Most people have heard of and understand Lupus. I have a pdoc who obviously does not believe. The med I am currently on takes away some of the pain, but not all, it takes the edge off. I can function for three hours, then have to lay down for a half hour or more, then up for three. This is on a good day. On a bad day I try to maintain the basics of survival and then get all heat wraps, muscle rubs and muscle relaxers I can muster and call it "a day to be gotten through. I also find I am experiencing more odd little symptoms for the first time. Cramping in my thigh muscles, relatively new. Freezing down to my core, really easily and hard to get warm again. It's like, even though I am dressed for the weather, when it is damp, I get these chills that just won't go away. Of course that could be part of all the infections I get. Anyone else seem predisposed to many bacterial infections, like one after another and multiple infections simultaneously?
Posted 2/22/2009 1:59 AM (GMT 0)
A friend of mine from another website makes beaded bracelets with small siver Hope ribbons - fibro's color is purple/lavendar. When I wear it and get compliments, it gives me a chance to talk aboug fibro.
Posted 2/22/2009 5:40 AM (GMT 0)
What a nice idea julie. I would love to have a bracelet like that. Beats a forehead tattoo because unlike Dagger, I forget my head quite frequently. I agree Dagger, sometimes it is confusing to others. I don't talk about fibro a lot. Sometimes it is obvious when I am hurting; other times it is not. I just walk more slowly. Very tired and not making much sense. But what you said Dagger was interesting.
Sue
Posted 2/22/2009 7:29 AM (GMT 0)
As I found out at work over the last several years, it doesn't seem to do much good to explain how you feel.  I tried to tell the people I worked with how low on energy I was and what it was like - tired at the end of the day, wiped out by Fri. night.

I rarely stayed late during the week and never worked overtime on weekends.  We were always told overtime was voluntary but ....

I got tired of the passive-aggressive behavior of a few co-workers.  You know, "the look" when I left on time at night, comments like "I'm so tired too." 

I don't think it would have helped to try and explain more about my low energy.  I doubt it would have helped to just complain more - but maybe I should have been more vocal?   It never seemed like the thing to do.  If I focused more on brain fog, malaise, or no energy, it wouldn't have helped me personally to get thru the day and be more productive.

I guess I'm just venting so sorry about this.  I suppose people who have no experience with chronic illness have to idea what it's like to struggle just to do a very trimmed down version of life. 

Posted 2/22/2009 12:31 PM (GMT 0)

I'm ashamed to admit this, but if we're being honest here, I'm sometimes embarrassed to tell people that I have fibro.  If you tell someone you have MS or lupus (no offense to those struggling with those horrible illnesses), you get a, "Wow, that must be tough."  If you tell them that you have fibro, you get "the look."   I often tell people I'm in pain because of my back sugeries, which is true, but not the whole story (everything else hurts too).

Fibro has such a bad rap because it is so little understood.  For the longest time even the medical community thought that it was all in our heads. 

I wish the skeptics, judgemental, and non-believers could experience an hour of the pain I feel every day, all day long.  Call it fibromyalgia or XYZ syndrome or whatever, it's real, it's debilitating, and it can be disabling.  Sometimes I wish the medical community would rename it: "All over body pain, fatigue, mental clarity, and co-existing conditions which is not all in the patient's head disease."

Oh, and I'm all for a poster, tattoo, bracelet, anything that would raise awareness for fibro.  There is actually a website that promotes awareness  for "invisible" chronic illnesses (fyi - it is tied into a Christian site) at http://www.invisibleillness.com.

Hugs - Austen

Posted 2/22/2009 5:20 PM (GMT 0)
To me when I look in the mirror I see a tired old lady that wasn't there a few years ago, I don't look well. I look older than both of my sisters who are 7 and 3 yrs older than I am. Even when I put makeup on it doesn't hide the tired worn out look I always have. I know I'm getting older but I have aged 10 yrs in the past few years. I know it's not my imagination cause I can see it in pictures. I have been organizing pictures on my computer so I can get them put on another drive and it is depressing when I see pictures taken before fibro and after fibro. So for me fibro has taken it's toll on my looks.

 

My family and close friends know I have fibro but like my neighbors I tell them I have muscle problems so when they see me staggering in my yard they don't think I'm hitting the bottle. When walking on grass every little lump or hole throughs my balance off. Even walking the dog on the pavement I can lose my balance easy.

 

Fibro does get a bad rap, especially since there are still doctors that don't believe in it. I have nurses in my family that don't believe fibro is real and I'm sure they have put doubt in other's heads. Than there are those like one of my SILs that dxd herself with fibro cause she was having aches and pains. All we can do is try to educate as many as we can and hope that the day will come soon when they all get it. We know how we feel and how this DD affects us and we have each other that we never have to try to explain this to.

 

luv and hugs

Marlee

Posted 2/22/2009 5:21 PM (GMT 0)

Forehead tattoo, bracelet, or whatever will bring more awareness for Fibro, count me in. I too am tired of getting the look when asked what is wrong. Sometimes I do look bad, but not always. It's true that most people understand better Lupus and other diseases. I will admit that I too, get embarrassed sometimes to try and explain what is wrong with me.

It's hard enough convincing my family that I am really hurting. Hopefully one day Fibro will be more understood. At least now, I hear about it more on t.v. so maybe one day we won't have to stress so much over the name of our disease or trying to explain!

Hugs!!   Margie

Posted 2/23/2009 11:56 AM (GMT 0)
I agree wholeheartedly!!!!! The only thing I ever hear about fibro is from the Lyrica commercials and both of those women look terrific! One is hosting a party and the other seems to be touring some foreign country on vacation! Maybe they should at least have a few "before" pictures!
Posted 2/23/2009 12:45 PM (GMT 0)
I did a post on this yesterday and once again it did not show up. I can not stand those lyrica commercials To me it says take this pill and you will be all better. That is just not so for everyone. I took it for 1 1/2 months and all I did was sleep. Thats not a great life either.
LeeAnn
Posted 2/23/2009 1:52 PM (GMT 0)
over the past years, i have learnt to just not say anything, because

 

1. no one really knows what fibro is.

2. i try to be strong through it all and not have to count on other people

3. i don't really want people feeling bad for me.

 

although where i work there is a lady suffering from so many diseases and she always askes if im okay, or do i need help.

 

but as for other people, even people who know they just think im a normal person with a normal body.

 

-Ashley

Posted 2/23/2009 1:53 PM (GMT 0)
I don't like the Lyrica commercials either, LeeAnn. I don't like the way they present the woman as having an itty bitty little pain in her neck, then they show her having the time of her life as if Lyrica is the magic bullet that will make her feel 20 again. Another thing I don't like about those commercials-and this is NO offense to those of you here who are older-is that the woman is probably in her 60's. To me, it gives the impression that only older women have fibro, when we all know the truth is that this dd can strike teenagers, young moms, men, children...the whole gambut. It's hard enough to get people to believe that I'm in pain without having commercials make it look like it's impossible for me to have fibro since I'm not "old enough". Grrr!

I, too, am all for a sign or a tattoo or a t-shirt-something to get people to see that fibro is real and it comes in all shapes, sizes, genders, and ages.
Posted 2/23/2009 2:37 PM (GMT 0)
I hate the newest Lyrica commercial.  It is so insulting.  The lady in the ad says something to the effect that her fibro muscle pain is really bad, but she is not the type of person to "just lie down and quit." So, she walked right into her dr.'s office and asked for Lyrica.

 

So those of us who are unable or unwilling to take Lyrica are quitters???  I beg to differ... 

 

It may not be the intent of the commercial, but that is how it sounds to me. It appears as if all you have to do is take Lyrica (which I have tried and couldn't take), and all will be well. I know many people get some relief from Lyrica, and I'm sure it can be a very helpful drug, but it is not a cure.  If I were a non-fibromite watching this, I would think that all you had to do was take a pill and you would be fine.  Those who don't take it are just being stubborn, ignorant, lazy, or "quitters."  It's no wonder that there are so many misconceptions about fibro.  I know the Lyrica commercials bring more attention to fibro, but is it the right kind?

 

Sorry for the rant, but I have a really strong aversion to those commercials.

 

Hugs - Austen

Posted 2/23/2009 3:15 PM (GMT 0)
Right on Austen. You nailed it. As soon as a self testing, self monitoring pharmaceutical company decides there is a market to capitalize on; presto, Fibromyalgia is on the map, but if you refuse Lyrica because of the horrific side effects, the least of which is dizziness, drowsiness, and weight gain, along with other, more severe muscle aches and pending death, well then you are a narcotic seeker who should be labelled an addict and be refused help. I have been on many stronger narcotics, and asked for more mild preparations to avoid the addiction issue. he one I am taking now is for mild pain, and if I miss a day or three, all that happens is I hurt more. I go through a three to four day slow withdrawl from the medicine every month or so. For example, I will take half the normal dose, then a third and then none for a couple days. All I experience is sore muscles and joints. I find even with my hugh medical file detailing all the soft tissue injuries I received due to being hit by a Dodge Ram truck in a crosswalk, as a pedestrian, I have no trouble getting my medicine. When I say, I have Fibromyalgia, I get "the look." Oh yeah, drug seeking behavior, all in her head seeking attention, trying to sidestep reality. So, I don't go there anymore. The last chapter of my profession required me to subdue an out of control teenager, with physical strength, equal to a man. I became less and less able as Fibro progressed. Then I was shafted in seniority permanent hiring by a ward clerk who stopped calling me for shifts in favor of a man who eventually got what should have been my Permanent job with med benefits, etc. So, between that and being hit by a Dodge Ram truck, and the never-ending pain of Fibro, guess what, I couldn't fight anymore, I gave up. I could never mention feeling poorly at the job or I would be shafted even sooner. I couldn't get another job because the pay rate was always lower and I believe there was something wrong with my references like "she was unable to keep up with duties", or such. I never found out exactly what it was but jobs that I should have gotten in a heartbeat, I didn't even get a second interview for. So much is taken from us. Sometimes it is hard to bear. I know I shouldn't be painting myself as a victim, but somedays, it's real, Man.  

Posted 2/23/2009 5:39 PM (GMT 0)
A while back someone posted a website where you can get fibro t-shirts, etc. Some were very funny. May 12 is fibro awareness day and we should all wear something to get noticed for fibro. Could whoever put up the website, repost it? Thanks, Diane
Posted 2/23/2009 7:13 PM (GMT 0)
I was just poking around on Yahoo and found a site that sells lots and lots of fibro products.  Like t-shirts, jewelry, key chains, hats, etc.  It was called zazzle.com

Posted 2/23/2009 8:25 PM (GMT 0)
I agree totally about the Lyrica commercials. First, she points out to us that "Fibromyalgia pain is real". (REALLY?? Who is that for? Those of us with fibro don't need to be told that our pain is real). Then, she says she's not going to "just lie down and quit". So, if I'm having a bad day and I lie down, then am I quitting? If I don't host big parties at my house, am I a quitter? This latest commercial is SO insulting. I do hope that some folks can get relief from Lyrica - but for me, who tried and it couldn't tolerate it, I get so angry when I see this, I'm sure it doesn't help my stress level which translates into more pain.
Posted 2/23/2009 9:27 PM (GMT 0)
Cafe press has some cute ones. My favorite: Fibromyalgia - sissies need not apply
Sue
Posted 2/24/2009 3:17 AM (GMT 0)
I'm with you guys. I try so hard to go about my days as if nothing is wrong but like most of you....anyone who knows me just has to look in my eyes to see that I feel like I'm dying! I'm so tired of this constant pain with no relief at all. I take Ambian 12.5 mg. at night to sleep and this is day three without more than 5 hrs. sleep as a total for all three days. I'm so exhausted all of the time. I'm on 100 mg. of Lyrica and 1800 mg. of Neurontin per day and I still feel like crap. I have to go for a thorastic epidural in a couple of weeks that will hopefully give me back my ability to drive. The pain of using my arms makes me vomit. I've had 4 cervical spinal surgeries which I know does not help things but just to get a few hours of relief! I was lucky that my co-workers were so good to help me. I was the office manager and there were days that I was on the phone with important people and I couldn't finish a sentance. They would listen in and help me with the words that I just couldn't come up with. Sometimes people look at you like you're on big drugs or drunk, as you've said and that is sad.
I think I'll check out that Cafe press and see what they have. It would be good for a laugh anyway. I hope tomorrow brings a better day for all of us because we could sure use it.
Nurse2
Posted 2/25/2009 12:06 AM (GMT 0)

SleepyBug said...
I don't like the Lyrica commercials either, LeeAnn. I don't like the way they present the woman as having an itty bitty little pain in her neck, then they show her having the time of her life as if Lyrica is the magic bullet that will make her feel 20 again. Another thing I don't like about those commercials-and this is NO offense to those of you here who are older-is that the woman is probably in her 60's. To me, it gives the impression that only older women have fibro, when we all know the truth is that this dd can strike teenagers, young moms, men, children...the whole gambut. It's hard enough to get people to believe that I'm in pain without having commercials make it look like it's impossible for me to have fibro since I'm not "old enough". Grrr!

I, too, am all for a sign or a tattoo or a t-shirt-something to get people to see that fibro is real and it comes in all shapes, sizes, genders, and ages.

Hello...new here. :-)

I found this fibro forum today, just to put my complaint in about that Lyrica commercial. My doctor does not think it's a good drug for me - so does that make me the "just give up" type person like Miss Commercial Lady says?

Eeek, sorry to come barreling in here and complaining....I really am a nice gal. smilewinkgrin
Posted 2/26/2009 6:56 AM (GMT 0)
The pain is very bad today....especially in my chest! It hurts to move or even take in a breath. It has to be the fibro because I just had a stress test and echo in Jan. that was fine. I threw up my dinner and ow my head is just foggy, too. This all started because I didn't wear my neck brace into JCPenney' s and I started "looking around". I always makes me sick. I thought I was doing pretty well eing careful but I guess not careful enough. I just wish all of this would just go away!!!!!!!!!!! Just a few hours relief and then I could start over.
Nurse2
✚ New Topic ✚ Reply