Are you secretely embarassed by FM?

Discussion in 'Fibromyalgia Main Forum' started by Chelz, May 28, 2009.

  1. Chelz

    Chelz New Member

    I know this sounds like a weird question, but had to ask because I am a little embarassed by my FM, here's why.

    This condition is invisible, you can look very healthy and be as sick as a dog. Family and some friends can be put off by my "I want to be alone" moods, and explaining the problems of FM to them is just plain useless.

    Some people who THINK they know FM have all the answers, they say "Put on a happy face, go exercise, you will be fine. Doesn't work.

    Alone time can be very important to me, especially during a flare up, sometimes this can be taken as "being lazy" yet, I still LOOK okay.

    With my FM, I can be just okay for a while, and other times anti-social depending on my pain level, fatigue level, etc, yet I still LOOK okay. This can be confusing to others, I suppose.

    I have to admit, I am embarassed by the complexities of this condition. If I broke my arm and I was in a sling, I feel I would be more credible to most people, hopefully, my arm would heal in time, the sling would come off, and I would be on my way to healing. Not so easy with FM.

    Does any of this make sense to you? Hugs, Chelz.
  2. tennisnut

    tennisnut New Member

    I understand COMPLETY. Just last week I saw someone who I hadn't seen for a couple of years - she knew I had been ill. She looked closely into my face at least twice with the same comment "you look well". I "never apologise -never explain" any longer, so said nothing. There is always the hint of "mmmm! I wonder if it's psychlogical". So this is the reason one may feel embarrased - but don't.

    Needless to say, after these social occasions, I don't look so well - tired face, red eyes and extra fatigue.

    Also, I think sometimes I take special care to look good, I don't know why - maybe habit and the fact that they are far and few between. Cheers, TN
  3. I do also. How can you not be. People are so judgemental. I think some of us do look sick though, I can see how pale my face is and dark circles and sometimes red patches. I feel bad that no one believes us. I don't understand why? Maybe if more men had this illness it would be looked at differently. Ruthie
  4. gb66

    gb66 Well-Known Member

    I am not so much embarassed by the FM as by the CFS. I have stopped telling people I have CFS because of the strange looks. I don't even think my new doctor believes it exists. I have just given up trying to explain.
    I'll just stick to the FM from now on. More people have heard of it and seem to accept it without a lot of questions. I guess I'm just chicken!! GB66
    [This Message was Edited on 05/30/2009]
  5. msnova74

    msnova74 New Member

    Am I embarrassed by my FM at times. You betcha!@!!

    The way I combat it especially at work is to be very open about my condition. I have people ask the dumb questions, but overall my it has been more good and honest questions than bad.

    Now my daughters school is another thing all together. At times people think I just cannot be bothered. They see me coming to school for trips and such. What they do not reliaze is that when I am able to do some things it is only through carefull planning and much rest before and after.

    My responses to all the stupid "lazy" remarks is probably not the best, but I tend to get quite short and scarcastic.

    But mostly I tend to feel bad for people like that, because chances are that someone close to them will have some version of an invisible illness. I have had a couple of people who have come back to me with an apology. They have a new understanding of what I go through.

    But is is extremely hard to deal with people who think it is a cop-out.

    This is probably the reason I have a small group of very close friends who understand when I tell them I can't do something, that I truly can't.

    What you are feeling is absolutely normal. Most of us probably have the same feelings from time to time at least.


  6. moi482001

    moi482001 Member

    because people tend to try and evaluate every move you make or don't make. Like"She could do that, but she says she's sick" or "She looks good". The appearance issue gets to me because people want you to look like s... and don't understand that it took a lot of energy to just get out.

    If it's a good, you try like heck to enjoy yourself and face the consequences later. But if you feel that inquiring look from others, it sort of kicks the fun out of it.

    This includes family, friends and other acquaintances.

    The one good thing I have learned is to try to not be judgmental about people because it hurts.
  7. Pansygirl

    Pansygirl New Member

    you were able to say what I was thinking, thank you.

    I struggle with this.

    gentle hugs

  8. Rockismom

    Rockismom New Member

    I DO get frustrated. I guess I'm like most of the others who have posted here.

    I met a very good friend for lunch not too long ago and discussed the fact that I had been thinking about filing for SSD before long and she said: "You'd better stop looking so good if you're thinking about filing for disability because you don't look sick at all. They'll take one look at you and deny you in a second!" This would have really hurt my feelings but I know her well and she was just trying to be helpful.

    There are many people here at work who think I do the bare necessities to complete my job and I think it really irks them. The fact of the matter is that I know my work inside out and have been here for over 25 years so it is very easy for me to know how to get things done. BUT they don't understand that almost everyday it takes all the energy I have when I don't feel like getting up out of bed and they don't realize how my shoulders burn like someone is sticking a hot poker on my back or how I feel so sick I could toss my cookies when I've been here at the computer all day and my hands hurt so bad I can hardly stand it..Nope, they have no idea how we suffer.

    So, that said, let them think whatever that will. If "they" don't like the way I do my job then they can find someone else to do it and I will file for SSD because THEY decided it is time!

    Most of my family understands and I am very blessed for that! Some of my friends haven't figured it out yet. They never ask if I need any help with anything or how I'm doing. Guess they aren't my REAL friends after all - are they?

    Hang in there! You're not alone.

  9. Janalynn

    Janalynn New Member

    I'm not embarrassed, but like many others have found it to be very frustrating. If the people could see me when I'm at home, they'd get a whole different view.

    I think many of us have learned to live with the pain. Sometimes there is NO hiding it. Often when I walk into work, it's obvious what kind of day I'm having. I can't help but walk gingerly.
    I've had people say "you're feeling much better today, I can tell." Nope, its just that I'm not showing it as much.
    I do actually get understanding from most people. If they don't, they don't tell me. Ironically, the one person, my best friend, is the one who never asks me how I feel, how Im doing (with FM) Still gets a little peeved when I don't want to run errands with her etc. I just try to go to others for the support or ear that I need.

    I don't think any of us are "babies" about our pain, I think it's actually the opposite, we are tough survivors!

    So embarrassed, no, but I definitely choose who I share details with. I try to educate people that I come into contact with regularly, giving examples of what we Fibro sufferers go through on a daily basis.
    Looking fine is hard!!!! I agree, a sling, a cast, crutches etc. is much easier for other to understand.
  10. munch1958

    munch1958 Member

    Have you ever read the spoon theory? I just love this because it's short (less than 2 pages). I can hand it out to people who don't understand that I'm flat out of spoons.

    The whole "But you don't look sick" web site is great!
  11. hermitlady

    hermitlady Member

    Having to explain this dd. Some people are totally clueless about FM/CFS.

    I feel like a total loser, like I must have done something bad in my past and now I'm being punished. My mind is so scattered and I find myself calling myself an idiot all the time.

    Other people probably think I'm strange, I'm very self conscious about the way I move, grimace in pain, and space out when conversing w people. I feel like I don't fit in anywhere, can't keep up w anyone. Makes me sad, makes me feel worthless.

    Unfortunately, I have MANY bad emotions tied to my physical ailments. I know some of it is due to depression, how can you not get depressed when you feel so lousy all the time? It's always something...

    And yes, I'm embarassed by my life...or my lack of life. I see other people living their lives while I sit and waste my own life day after day. It's awful.
  12. faithinlove

    faithinlove New Member

    You with your post had the courage to say how I feel. I appreciate how you explain your feeling and really can relate to it and know exactly what you are talking about and the emotions you feel.
    Take care and bless you,
    [This Message was Edited on 05/29/2009]
  13. bigmama2

    bigmama2 New Member

    well i sure was embarassed today- at pharmacy i had to give my phone number. i was foggy and i could not remember my phone number. at all. i kept trying. i am only in my 30's. this was ridiculous! so finally i just made a phone number up!

    at least the pharmacy tech was nice about it. it tried to make a joke about it.


  14. AuntTammie

    AuntTammie New Member

    usually I am not embarrassed, but am either frustrated or, at times, angry....or just sad....but I do get embarrassed when the brain fog is bad and I can't seem to put together a sentence bc I can't find words, or I say something that makes me sound stupid, or I forget people's names (& I mean people I know very well and see almost weekly at Bible study or church - & since there are not that many people in my life anymore bc I cannot get out much, it would seem that it would be easier to remember the names of those who are around!)....I also get embarrassed when the shaking/jerking stuff gets bad - today I managed to go to the bank, but I absolutely could not write my account number down bc my hand was jerking so bad - I kind of laughed it off, but it was embarrassing
  15. BeansMom

    BeansMom New Member

    I never knew anyone felt this way, like I do.

    I don't tell anyone that I know (even at work) that I have been diagnosed. My husband, my family, and his family are the only ones that know. I know at some point, I will have to tell more people just b/c of my limitations and behavior.

    I'm embarassed b/c I there are a lot of people who don't "believe in" fibro...they think its an excuse to be lazy, take meds, or just get attention. I also don't want to be labeled as a "hypochondriac."
    Even when I take my medications at work, I try to make sure no one is around or looking at me. I just started a new job a few months ago & I don't know what I will do when I have a big flare and cannot function normally or have to call in late/sick b/c I cannot get out of bed due to pain. I guess I'll deal with it when it happens.

    But yes, this makes a lot of sense to me and I know exactly how you feel. I almost wish there was something visual people could see or that FM didn't have the stigma attached to it so I could tell people.
  16. italiano

    italiano New Member

    Rockismom's comments were right on the head with me. took the word's out of my mouth.
    Yes, it's so one can understand. that's why on this site we have each other.
    hang in.
  17. vivian53

    vivian53 Member

    Good post. I think we can tell from the responses that most of us have felt embarrassed or at least frustrated in some way having to do with others perception of us because of our illness (es).

    I have been both, and like many others, now limit what I tell people about my health. I have lately begun to say that I have retired, which is true, just way before I was supposed to, and in the middle of my career. Maybe people think I am now independently wealthy. LOL

    BigM2 I identify with what you've said, as usual.

    Hey hermitlady. Yes it 'is always something', and we always have to keep carrying on in spite of that, so tiring. I have felt many times like I didn't fit in anymore because I couldn't go and do like everyone else. It can be very depressing.

    My son was recently pretending to be me saying 'okay now what was I saying again, I forgot?'
    He didn't mean to hurt my feelings but it did. I DO constantly forget what I am saying, loose my train of thought.

    Reading what Jam said reminded me of the Serenity prayer. Accepting the things we can't change and letting go of the rest (including others perceptions of us) is something I am always striving for.

    Sometimes the letting go might be that of our old lives BD (before this disease : ]) and old expectations, and developing new ones.

    I think everyone here has something to be proud of.....ourselves. You all are some of the bravest people I have ever met.

    with love
  18. hermitlady

    hermitlady Member

    Thank you for such a nice post. i just came home from visiting my sisters and mother for a week and am completely drained and exhausted. It was hard for me to "keep Up" w them, even my 85 yr old mom has more energy than me. And my sisters are sooo energetic, my polar opposites for some reason. It really made me sad to feel so lousy compared to them, having to rest frequently and not able to go go go like they do....and I'm the youngest!

    I wish I could feel proud and brave like you mentioned, but all I can do is feel sad and discouraged. Not exactly what I thought my life would be.

    xxxooo Hermit
  19. daboysone

    daboysone New Member

    Yes this happens to me all the time. Like and I went to Walmart to grocery shop. I sat in the electric scooter and she got a regular cart, I went in and went to the bathroom and came out and took the electric scooter back because I was afraid that I might see someone I know and they wouldn't understand my use of the electric scooter because on the outside I look fine. I did however, regret this decision because by the time we were done shopping my legs and feet hurt so bad! They still do! So I understand what you mean! I guess we will all have to adjust to this somehow. Good luck! M
  20. well embarassed, is not the word. MY problem is even with my family I sort of have hid it for yrs. I pushed myself and tried to act normal. Now it is almost hard to hide it as it has gotten worse and my family has gotten used to be being "normal" so they expect it. I am not explaining it well at all. I guess its just now that I have faked it all these yrs. they don't realize how much I suffer in pain.

    For instance its hard for me to cook a big dinner for family of 7-11. But when I say I don't want to have everyone over, my husband asks them for dinner anyways and it is happening more and more that he asks them, even when I ask him not to as its not a good day. So he REALLY doesn't understand how much pain I am in, exhausting and hard it is for me to do this because he doesn't listen to me. do I make sense? he'll say he will help, but the little he does isn't enough. Sometimes I want to scream!

    But then it makes me mad to see older people out walking, running and enjoying life while I am on the inside looking out, missing out on life.

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