Stigma around people with FM

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Q&A | Fibromyalgia Support Groups | Stigma around people with FM

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Name: Patsfan Title of Question: Stigma around people with FM

Question: 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!! ?

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Name: tnichel | Date: February 28, 2008, 15:57

Answer: 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. =

Name: Patsfan | Date: March 1, 2008, 10:02

Answer: 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. =

Name: amandaknits | Date: March 5, 2008, 16:28

Answer: 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? =

Name: stephani | Date: March 22, 2008, 12:04

Answer: 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 =

Name: ArrowDel | Date: March 26, 2008, 16:33

Answer: *...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) =

Name: ArrowDel | Date: March 26, 2008, 16:40

Answer: 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. =

Name: chloe3 | Date: March 26, 2008, 19:31

Answer: 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) =