How do you deal with people who think you are faking it?

Amy - posted on 03/11/2012

You try not to worry what other people are thinking about you. They probably have no clue what it's like. Most people have this idea that if you're disabled or in pain it's there 24/7/365. We know it's not like that. Some days are worse than others; heck, sometimes its hour by hour. I try to educate the people who ask. I've gotten dirty looks for parking in the handicap spaces. I ignore them. Those people are clueless.

Michelle - posted on 10/29/2010

I was told by one of the gentlman at the Fibromyalgia me/cfs support group I attend once a month that when asked about the Fibro tell them its like a migrain in the head but on the whole body and can be 10 times worse, I tell people its a form of arthritis that affects the central nervous system and caused cronic pain in the nerve endings they seem to understand and say oh how terrible how do you cope with that, rest pain medication, doing things at a pace you know wont cause your pain to increase, My recent miscarriage my left leg flared as well due to the upset and stress. I was given 2 doses of morphine, my pain level was 9 all over especially in the leg and hip.
I am having my thyroid totally removed in 5 days Im not worried about the acutal surgery I know Im in good hands with the surgeon and the hospital its the recovery that has me worried, I had surgery July 2009 when I lost twins it was an eptopic pregnancy I was on strong pain medication for 4 weeks same when I had my gall bladder operation in march 2008 took 8 weeks I was diagnosed 4 months later with cronic Fibromyalgia/cronic fatigue, with still no reason for the constant hive outbreaks that diagnosis came November 2009 vasomotor rhinitis, multiple chemical sensativity, multiple allergies to dust mites dust cats dogs birds cockaroaches grass seeds pollens and a long list of others, hyersenstaive airways. The changing weather also plays a big factor on our conditions as well too cold we are in pain too hot and humid can cause pain...... It sucks living with these illnesses but we have to learn to live with them and funtion

Michelle - posted on 10/29/2010

I can understand how you feel I have just bought a new walking stick as the one I had was over 10 yers old and made a clunking noise as I walked I feel self consious when I have to use it especially in shopping centers as everyone looks at you with funny looks as a 42 year old that looks healty should not be using one. I have found too that when people ask you what is wrong and you say you have Fibromyalgia they look at you stupid and ask what it is you tell them and they still look at you as though you are making it up I had one step family memeber call me a fat lazy explict told me to get out and get a job and loose weight, needless to say that person had his mother are no longer welcome on my home and it has cause a huge rift between myself and my father and step family. I have joined a support group in my area that meets once a month it has been good seeing and talking to people with the same illness

MamaMoose1 - posted on 08/08/2010

Hi Heather...
Wow, good for you, I am so sick of rude people and even family members don't understand fm unless they have it....I have had it for 10 yrs now and just recently got ssdi out of no more choice other than my body says it's time and I have many other related medical needs to go along with fm....You and all of us must stick together, and keep our chins up for the people who are so ignorant,rude, and have no clue about what it's like to feel your whole life change in front of our eyes and we can't do a thing about it. All the meds I have never ever ever, take the pain away, they just make my body parts feel like 900 pounds each...and feel whooziy, and sleep, what is that these days, I am not down to about 2-3 hrs only a day...Well, just had to give you kudo's for sticking up for all of us, and maybe someday the lucky people who don't have this fm or any of life changing diseases will have respect if they don't understand us or our pain etc.. Have a good day.

Stephanie - posted on 04/29/2010

And Lyrica is for people that are perfectly healthy and have no history, or family history, of diabetes, heart disease, and other major ilneses....Good luck with that. I am on a combination of Cymbalta and Gabapentin. And it works better than anything else has since I was diagnosed 8 years ago.

Janan - posted on 04/21/2010

Oh sweetheart, you poor thing..I know what you mean, I am 35 & I was SERIOUSLY eyeing up a walking cane the other day at walgreens, bottom line is tell people you have Fibro & has similar symptoms to MS, that's what I have done, because they seem to "get it" if it's people that I will not likely have in my life, just to make "quick" getaways. When people hear MS, they go ohhhh that's terrible, but no where NEAR same as Fibro, Ohhh...can't you take Lyrica, LOL..Oh sure babes, I will take Lyrica & Fibro will just "melt" away..LMAO..anyway, let's get real right, like I was saying I expalin in short conversations that MS & Fibro are practically the same & some days are better than others..that's all, what else can you do, and don't stress about people thinking you're "faking" it, you are NOT & you're doing the BEST you can do!!!

Monique (Niqi) - posted on 02/17/2010

I get annoyed with all the remarks too! I also feel guilty because I have all my limbs yet feel in more pain and have less mobility than some people with missing limbs. And yet THEY get all the help, support, and sympathy from strangers. I feel strange having elderly run past me in the store. it is really difficult to live this way, let alone function. And to have comments like that really does make me feel worse.

Wish I could hold up a sign or wear a tshirt that says I might not look it but I am in extreme pain most hours. yk?

Tonya - posted on 02/12/2010

I forgot to mention I have had chronic pain for at least10yrs for sure..

Tonya - posted on 02/12/2010

Alot of the time ,I just don't use anything because I always think someone else needs it more than me. For some reason I like to see how much pain I can take..I just started a new med yesterday, It's called Avella..I guess it is the same make up as cymbalta. I also am a legal marijuana patient and would definitley recommend trying it, It works for me and I never really realized the medicinal qualities until I looked into the whole horticulture of marijuana..Check it out! If you have anxiety or panic attacks like me. Try what they call an indica and not a sativa plant. The sativa makes me panicky..Just a thought..

Amanda - posted on 02/10/2010

I thought it was just me fighting against people that didn't believe me. my friend of 8 years thinks i was making it up and i didn't deserve a disability blue badge she kept slagging me off taking digs at me saying i was taking the pain killers for the sake of it and i was making myself worse by sitting down or sleeping when i needed it , in the end she was causing so much trouble and was saying such hurtfull things i ended the friendship but now she keeps sending emails and txt to try and make up even though iv told her about 100 times im not interested because i don't wont negative people around me i need people who will support me and try to understand what im going through she still keeps harrasses me. What made it even worse is my ex friend said she had the same as me but i never once questioned her diagnosis iv decided to just ignore her hoping she will just get the message....

So keep all the people who you trust and everyone else just ignore there not worth the worry..
take care
Amanda x

Jeannine - posted on 01/30/2010

Wow, that's amazing.... It's great you're Dr. is willing to help with the flare ups in such a way. I could have used one of those last week (and i take daily meds)! It's ridiculous though isn't it?

Stephanie - posted on 01/29/2010

I was diagnosed almost 8 years ago, and my Dr. has had to send me to the ER for IV meds to break the pain flares. He will even call ahead and give them the cocktail that he wants them to use; my Dr. is a dept. co-chair and county coroner; and the ER docs have asked if I was just there to get drugs. I am getting ready to have my 32nd birthday next week. I have 3 children and for the most part I have refuse daily pain meds because they interfere with my ability to take care of my children. So how can I be a "drug-seeker" if I am actually refusing drugs? It goes along with the same question that we all get asked, "you don't look sick, so how can you BE sick?"

Heather - posted on 01/16/2010

I feel the same way when I use a chair to get around. I only use one if I will be in an environment where a lot of walking will be required. A lot of people do not realize that we use canes or wheelchairs as "preventatives." If I wait until I am in too much pain to use either, I know I am setting myself up for days/weeks of recovery. But like you know, most people don't get it. I know a couple (who I used to be good friends with) who do not think much of my fibro diagnosis. They have made it clear I should not be collecting disability, I should not have stopped working, I should not have a cleaning woman help me out. I have to defend myself around them all the time., Ergo, I no longer spend much time with them. I don't have time for people who just don't get it. I have fired a physical therapist, a doctor, and unfortunately a few friends. But in the long run, it was for the best. We can only educate, not change other people. Be brave! :)
Heather

Barb - posted on 08/29/2009

In trying to explain how I feel to others, I tell them to imagine just up and running a marathon - out of the blue sky- with no practice, etc. You would have to finish the marathon, even if that meant you were barely crawling to the finish line, and many hours after everyone else had finished. Imagine how sore and painful, even humiliating, you would feel the following day. That's what FM feels like, but for no apparent reason!

Dawn - posted on 08/13/2009

Hello, sorry it has been a while since I got on here. I am sad to hear that people accuse us all of "faking" it. However, I have the same problem as well. Even my husband once in a while will slip and say that to me. I always try to remember that others who do not have FM have NO idea of what the heck it is!! I have tried to put into words for my husband to understand..and there is just no real words for me to describe how bad I feel most days. That is great that one day you were feeling good and walked..dont worry about what others say. All you need to focus on is YOU and you taking care of yourself and doing what your body needs. I rode in a scooter the other day at Wal-Mart, and I could see people looking at me because I am younger and they were giving me looks like "why are you in that scooter you lazy person"..and yes I am overweight so they probalby thought I was to fat to walk..that is just the way people are. I just went on my business and did my shopping even though I was embarrased the whole time I was in there.

Try to keep moving ahead with your walking..but..if you need to scoot..then scoot!! Just be yourself and listen to what your body needs!!

Rhonda - posted on 07/21/2009

I get the same thing because of the disable sign my Dr gave me after a friend that works with me and sees the same Dr told him I have many days that I hurt to bad I can hardly walk. If it is someone I know really well I give them several sites to look up online about it. This has helped me so much.

Angela - posted on 07/04/2009

I was diagnosed earlier this year and i am still trying to figure out the same question. I sometimes have to use a cane to help keep me stable during the bad days. I hate using it at work because it draws more attention to me and then the questions start flying and then I start to worry that people think I am faking it. I work at an elementary school, so you know the kids will definately bring it up. One co-worker told me one day "to stop thinking about it and it won't hurt so much". That doesn't work for Fibro suffers and that was such a dumb statement, but I forgave her since she was trying to help in her own way. So basically, I don't know how to handle this situation and when you hurt it's really hard to be nice and polite when you want to tell them how you are really feeling. Sorry that I am not much help.