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Stigma around people with FM
19 Replies
Patsfan - February 25

I am been recently diagnosed with FM, and am resistance to this. I am having a hard time accepting it. It seems when you tell people you have FM, you get this look...especially from medical people. ( and I am in the field ). I tend to really judge myself and see this as a character flaw. I keep telling myself it is not. I find people around me just don't get it. Am I making any sense? I have had people tell me that people with FM are needy and whiny ( medical people ) and I just cringe!!

 

tnichel - February 28

I understand what you are saying. But that remark about fm'ers being needy and whiny pisses me off. The only time I've ever been overlly emotional was in the months leadng up to my diagnosis and none of the medicines prescribed were working so I was intense pain. But anyone with an unknown medical condition is going to be stressed. I do believe people treat you differently once they found out what you have. I have a number of people, who I thought were close friends, who have distanced themselves from me. Nevermind the fact that I helped them through their worst times. I'm having a hard time not viewing myself as lazy or a non-productive member of society. I always thought I would be involved in a number of community groups and mentoring programs. Now the only thing I can do is go to work 5 days a weeks and try to recover from the exhaustion on my days off. It's frustrating and it often bothers me that others may think me lazy. I know a lot of this is all in the mind but there is some reality to it and I hate it. On top of that I'm a single female who for so long has relied on no one but myself. Being too independent and rarely asking for anyones help for anything. Now I just want someone to rely on and to listen to me on bad days but no one wants to deal with a sickly person..sometimes not even your family. But you know, some days you want to take off the mask, the facade, you put up to keep others from being uncomfortable. I understand what you're are going thru and hope things improve for you.

 

Patsfan - March 1

Thanks for your reply. I work with two friends that never ask me how I am in regards to my pain. They know I have it, but they don't really care or want to hear about it. One finally admitted that she hated that she did not understand a disease such as FM. And she is not good when people have "psychological issues". So I guess it is just her personality. I try not to take it personally. Even though my husband tries to help, he doesn't even ask about my pain. Maybe because he already knows.
Maybe I want sympathy sometimes, but mostly some understanding. I guess someone who doesn't experience chronic pain will never really appreciate what we go through. I am reading a book called Autogenic training A Mind Body Approach to the Treatment of Fibromyaliga and Chronic Pain Syndrome by Micah R. Sadigh Phd. It is helpful. When people say it is all in your head, I believe it is. It is a brain chemistry problem. Not imagined, but imbalances or messages sent from the brain to the body that causes the muscle changes etc.
This is my understanding of it at least.

 

amandaknits - March 5

When I went back to see my GP after she saw my symptoms and referred me to a specific doctor and I came back and said I had FM.. she gave me a "brush-off" look. I was surprised. She asked me if I had told him about the pain in my neck... I said I did and that was the end. My husband is sick of hearing me cry in pain. I think I rely on him too much. I need to start doing things for myself even though I hurt. This is on top of pre-existing issues of disc degeneration and bipolar disorder. I just wish people could feel my pain for a moment to see what it's like so that they can understand. Do I need a new GP? Do I need to see a different doctor to see if I'm given the same diagnosis?

 

stephani - March 22

i am recently diagnosed too and have had this for about 3-4 years. NO ONE UNDERSTANDS!!!!!! NO ONE except someone who has it. lately i have just been trying to tell my husband about things i have found while researching fms or just needing some one to listen or sympathize. NOTHING> all i get back is how much they all hurt. and i am sure they all have issues but not like fms. i just wish people would understand. that in itself would be a huge help. take care

 

ArrowDel - March 26

*...again makes an evil wish that those "walk a mile in another's shoes" bookmarks came in pairs that actually worked to switch people into each other's bodies ...even for just an hour* ...however since this will never happen...you just have to think "rhino" (thick hide and stubborn as all heck) Thick hide...don't let the looks and comments get to you...most likely, they're from people that are still in at least partial denial that this is a real problem. Stubbornness: Search out your triggers, remove them from your environment if you can. This can reduce some of your symptoms (nearly impossible to do 100% of the time...but usually the effort is worth the results)

 

ArrowDel - March 26

I forgot to add: try some new foods too, sometimes you'll find one that has something that you were missing...because, yes FM *is* in your head (and throughout your body)...but it's the chemicals, not a "I think therefore I hurt" thing.

 

chloe3 - March 26

Patsfan: I'm so sorry you are having such a hard time. I felt exactly as you--resistant to accepting the fact that I had an "illness." It's such a burden to carry, but more over, it somehow implies that you are less than the average person--less than the person you were before. It's a terrible stigma. People actually do look at you differently--especially if you were someone who frequently burned the candle at both ends and now have trouble burning the candle at all. My family used to be proud of my accomplishments and proud of my ability to juggle a successful career, my marriage, raising children, and being a strong part of my community. I was the mom that drove the children all over creation; the woman whose home was overflowing with kids. I was the one my elderly parents relied upon, and the rock that my husband and children had become accustomed to living with. I was the one person in the office that was there before everyone else and left long afterward--sometimes coming back at 10:00 p.m. to burn the midnight oil. I loved life and loved being relied upon by everyone around me. That was my identity...which is why I fell so very hard ten years ago when I became ill and received my diagnosis of lupus and fibromyalgia. To add salt to the wound, not one year later the doctors found ovarian cancer, as well. My life had successfully crumbled beneath me and my self-worth went right along with it. It has taken me nine out of ten years to finally realize that my life is far from over--that just because I don't carry the same responsibilities as I did in the past, I was every bit as important and worthy as anyone else. My life is important and I am still an important member of my family and community. Just because I no longer have that "all-important" career doesn't mean I'm worthless. I decided to take a different approach and, instead of resisting something over which I had no control, I'm embracing it. I do not define myself as someone who is "sick" or "different" from others--I define myself as an "individual" with my own personal set of strengths and weaknesses. Let's face it--we all have strengths and weaknesses whether we have an illness or not. The weaknesses are simply easier to hide when no one has labeled you as "having fibromyalgia" or anything else for that matter. However, on the positive side, let's take a look at some of the gifts I now have that I didn't in my "previous life." These gifts are priceless. For example, how about the fact that I no longer define my entire identity and personal value by my career and how much others rely on me?! I no longer find myself running around like a chicken with my head cut off, meeting myself coming and going without even a single minute to enjoy my life or take time to smell the roses. The truth is, prior to my diagnosis, I wasn't truly happy because I didn't take the time to appreciate what I had, much less to live in the moment. Now, every day when I get out of bed, this sometimes agonizing pain reminds me that I'm alive and being alive is a wonderful gift! Every day I make a choice to embrace my world and truly engage in my daily activities. I no longer take things for granted--I "truly appreciate" what I have and I take the time to let others know how important they are to me. Life is short--far too short to worry about what others think of us, and far too short to deny ourselves a full and happy life, no matter what the circumstances. I wish you only good things and a long, full life in which you take time to appreciate--in spite of "illness!' :0)

 

VictoriaB - September 8

I am thankful for your response Chloe, I was a lot like you except my children are grown and now have g-children. I had to drop out of a FNP program after completing 1/3 of it when the Fibro hit. Everyone looks at me differently. This past week has been bad as I have decided to embrace my life and be happy for what I have. I have refused to let the way other people respond to me or treat me be given the time of day.Not anymore-thankful even tho/ I am in sever pain!!

 

ibritz - September 9

Yes, Yes! I have found myself just telling people I have several health problems. I mean it's not a lie, with all the symptomsand disorders from the Fibro. I have found myself in volunteering for my church. They know how I was and how I am now. When they call wanting my help, I generally say I'll be there. We both know I may have to cancel at the last minute, and I feel bad, but, I know I have their love and support. And, I know they will still ask for my help. Also, if there is a quick need for something, I am there for them to contact for the help. I no longer have an income, but I do have an OUTCOME. I help others when I can, and wehn I need help they are there for me. I am blessed!

 

Fantod - October 21

You are making perfect sense. As a medical professional, you are experiencing first-hand how patients with FMS are typically treated. FMS is by no means a character flaw. It is a bonafide malfunction of the central nervous system and has a genetic component as it tends to run in families. None of us signed up for this illness voluntarily. Life is not fair and you just have to make the best of it. Easier said than done. You could turn this into an opportunity to serve as an ambassador for the rest of us FMS folks. Every single one of us has endured some nitwit of a doctor belittling this condition or implying that we are lying. If "we" are needy than it is only because the large majority of the medical profession won't listen or act like they care. You could set an example for your associates and gently correct them when they make broad and incorrect assertions about people with FMS. As a doctor who actually has it, I would hope they would listen to you. Some empathy would go a long way in helping patients with FMS cope. I hope that my response has been helpful to you in some way. Take care.

 

raef90 - November 7

I agree with fantod, I spent 5 years in the Navy being ridiculed and belittled for saying I was in extreme pain. I would suffer through 20 hour work days and unending work weeks in the submarine community and when I would complain to the boat corpsman he would tell me to suck it up, even when I broke my L2 in my lower back, in fact, he wouldn't even examine my back and take me off the work rotation, so I had to continue working through a broken back until we got back into port 1 month later! When I got back, most of the doctors I interacted with treated me like a delinquent trying to get out of having to do my chores, and finally 1 doctor from Madigan Army Hospital said I simply need a full assessment of my health, told me and gave it to me in writing that I am not fit to go back out to sea and my boat corpsman just ripped it up and ignored my pain.

3 years later now, I found out that I had broken my back, that I have severe and worsening scoleosis in my Thorasic portion of the spine which was never there when I was younger (even though the doctor's are trying to tell me I was born with it... but I had x-rays when I was younger and never a comment on my spine before 2005), FM, and many unidentified aches and pains that I can't even get a doctor to look at or pay attention to because of the FM, and even worse, because "men don't get FM" mentality that I find in every doctor. When I had my disability claim with the Navy the doctor that I got my physical said that to my face. It was everything I could do to hold back from laying into him...

Aside from that, I do have a question of others here, I have an incredibly high pain tolerance, although I can't take my chronic pain, I can take incredible punishment. Am I alone in the community for being able to take impossible amounts of pain, whether it's from a deep tissue massage therapist wrenching into my muscles as deep as they can go while I don't bat an eyelash, or sparring in martial arts and taking a kick that's like a battering ram to the chest and bouncing back to continue fighting without flinching? I just want to know, because at least in my interactions, most of us do have a very high pain threshold for external pain, just that we feel pain all day every day, not that we're more sensitive to pain...

Thanks for listening to me rant

 

kdavis - November 13

I also find it hard facing the "looks" and whispers everyday. I even keep FM literature in my office hoping people will at least try to understand, but they don't. I recently had a year long relationship end and my FM was a big part of it ending. He pretended to understand, but in the end he felt I was overreacting and whining about my pain. I don't tell people I'm hurting because that is the reaction I fear. It's hard to deal with, but I know someday people will understand that we do have a real health condition. Just take care of yourself and realize it isn't YOUR fault that you have FM.

raef90, I too have a pretty high tolerance for pain outside of the everyday FM pain we experience. I can take extreme deep tissue massage and other external pain well. I think there are a lot of us with FM out there like this. I'm not sure why that is. We get used to being in pain everyday so maybe that is why we can withstand the external pain so well. Hopefully we'll keep learning more about FM and understand better why our bodies react the way they do.

 

jacquie - January 19

I know exactly what you mean. Sometimes medical people can be the stupidest people on the planet. They are highly resistent to change or anything new discoveries. I know I worked with doctors and technologists most of my life. That's why you have to stay away from those people and chat with people online. Looking back I know I had FMS at age 9, and I believe my mother's mother had it also. My mother may have had it, but I now know she had Reynaud's.

 

writerchick - January 28

I spent 6 years trying to figure out what was wrong with me. Even after being diagnosed, I kept looking because FMS isn't real. Yeah, I was in denial along with the rest of the world that doesn't believe the truth. Now that I have accepted FMS as my reality, life is much better. I understand my limitations and most of the time accept them. However, I still dread going to the doctor. Even the practitioners that I have seen that understand it seem to treat me like I am drug seeking and whining. Now that I am without health coverage I am truly afraid of the response I will get with a clinic doctor if the need arises.

Thanks for being here!

 

Oksana - February 24

Patsfan,

Who cares what others think. I remember what people said about PMS sufferers and now PMS is accepted as something real. We know how we feel and that is all that matters. There is great literature out there to help us. Take care, be kind to yourself, meditate if you wish and pamper yourself. I understand how you feel and you are making sense. The people that say we are needy and whiny are just selfish and unacceptable of anyone else s illness. My sister in law is a nurse and I find that many people in the medical field are emotionally numb to our symptoms or anyone else s. I guess it's a way to survive their career choice and not get emotionally attached to anyone...to better do their jobs. Unfortunately these feeling spew into personal lives. When I was hit and dragged she did not even call to ask me how I was. I know that she likes me. ps I'm not saying all medical people are like this but from experience many. I just don't take it to heart and neither should you. If they could only measure pain....Oksana

 

Arista - March 2

Hi Patsfan,

I am a registered nurse and I recently had my supervisor tell me that her sister has fibromyalgia. She said that if I told her that I had Cancer or Diabetes she could relate or understand what I was going through. She stated that she couldn't understand it and that most people think Fibros are crazy(she swears she believes me though). I get absolutely no sympathy from fellow nurses. Sometimes I want to change my career.- it's gotten so bad.

 

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