But you look so healthy You don't look sick.

Discussion in 'Fibromyalgia Main Forum' started by Honora88, Jun 24, 2008.

  1. Honora88

    Honora88 Member

    I'm frustrated by all the people who tell me I look great and so healthy when I tell them I am sick. They refuse to believe it. I've told my college friends each several times over the phone and they don't want to believe it. In their defense they haven't seen me physically but other people have.

    I had a home health aide try to cut out 1.5 hours early and tell me I can pick up my own laundry in the dryer. I felt discriminated against because I am young.

    One time I got so annoyed after the person at SSDI office told me 3-4 times I look so healthy that I asked him, " Well, do people in Hospice look like they are going to die? Not the ones I've seen".

    I also had a brain hemmorrage and was in the hospital for 2 weeks and so many doctors who came by said I looked so healthy.

    I feel like saying, "well I looked ten times healthier than I did when I wasn't sick"

    How do I cope with this?
    perhaps that was why my dr won't fill out my paperwork for school loans discharge and disability. Luckily I got awarded ssdi anyway.
  2. DeborahLynn

    DeborahLynn Member

    I have had several people tell me that. It's happened so many times that I don't even let it bother me anymore. I just say, "Yes, that's one of the aspects of this disease; you look fine, but feel like you're about to collapse."

    It's hard to deal this this attitude especially from the medical profession. Hopefully the medical professions are learning more about ME/CFS and FMS now, and accepting it.

    God bless you! Love,

  3. DesertRain

    DesertRain New Member

    Oh my gosh, the "but you really look good" comment drives me crazy!!!!!!! I feel SO discounted and misunderstood and ALONE when I hear that! I sometimes get defensive, like I want to change their mind by getting them to "see" my reality, but usually get nowhere

    I try to remember that most people are really well meaning when they say this. I know some very sweet people who have said this and I'm sure the last thing they would want is for me to feel bad about their comment.

    Unfortunately, one of my best friend's tries to cheer me up by joking about my condition, like "you need espresso beans" hee, hee or "you're just tired b/c your purse is so heavy" hee, hee. UGH! (though, again, I do think she is well meaning). I don't even pretend to be amused anymore, I just quietly say that's not the case. (I know I need to be assertive and tell her how this feels, but I'm usually too tired for assertiveness!!). The other day, I did say "oh, I'm really feeling the sympathy and she laughed. How many times do I have to explain this to her? I would appreciate some modest sympathy and sensitivity. (Thanks for letting me vent on this, everyone!!!) :)

    Another good friend of mine is very sensitive which I cherish. She can look at me and say "do I even ASK how your doing??" like she already knows I'm suffering (tho' 5 min later I'll get the "wow, you look great" comment from someone else). If nothing else, you learn who the sensitive people with gifts of compassion are and, for the other good friends, just give up that expectation, enjoy them for the things you do love about them, and turn to the sensitive, understanding ones when times are tough. No one can be everything to everyone.

    This subject is especially tough for me because I am extremely sensitive and compassionate myself, so I take it extra hard if others are not. Can you relate, ktn105?

    Hugs of compassion and understanding to you and others,
  4. cookie1960

    cookie1960 New Member

    Dear ktn105,

    I once had a nurse make that comment to me - so it comes as no surprise that others say the same. I usually reply back with "...well, looks can be deceiving!"

    Explain to them that FM is not about how you look but rather about how you feel.

    Or give them the good old clothespin experience. Put a clothespin on each finger and see how long they can stand the pain. Tell them that's what FM feels like to us EVERY SINGLE DAY.

  5. Empower

    Empower New Member

    I went to a funeral and I can't tell you how many people said this to me

    I say "better to look good, than to feel good!" thanks to Billy Crystal's "You look marvelous" routine!!!

    "Fernando: Saludos, my friends. How are you, darlings? It is so lovely to be back, here in the Hideaway. And, as you know, my friends.. as you can see, the booth is empty, and I am very upset. I don't feel marvelous. I look marvelous, but I don't feel marvelous. Which is hokie-dokie for me, because, as you know, my credo is "It is better to look good than to feel good." Billy Crystal
    <br>[<i>This Message was Edited on 06/24/2008</i>]
  6. Pennygirl2

    Pennygirl2 New Member

    Hi ktn 105, of course I truly understand what you are saying and the frustration that comes with people's careless comments. But i am really glad you got ssdi anyway. That is great. SS tells me I can't quality for the two types of SS benefits. (one because I haven't worked in 10 years ((give me a break)) and other becuase I have "some, any savings".
    DeborahLynn, my middle is Lynn too! I really liked your suggestion of "Yes that is one of the aspects of this illness, you look fine, but feel like you are going to collapse". That sounds useful, thanks for suggesting it. Hugs to all, Penny
  7. 28years

    28years New Member

    When people used to say that to me I always wanted to say "Funny, you don't look ignorant." But I never had the courage.

    Now my illness is so bad and my walking problems sooooo obvisous, people don't say that to me any more.
  8. marti_zavala

    marti_zavala Member

    Ha ha - ROFL - that is perfect! I don't know if I would have the courage either, but I love it. I just might use it someday.

    KTN, I have the same problem. Not sure what can be done. The other comment about that is the aspect of this disease is very good too.

    Funny thing is when people say that the most, is when I am in the most pain. I think I try extra hard to "be normal" that they think I am.

    My real friends just have to look in my eyes and they don't even have to ask, they know.

  9. Meg1710

    Meg1710 New Member

    ...that is really, really funny!

    Even my dear mother doesn't believe me I don't think.

    When my cough is bad which it has been for the past eleven weeks then she says "your cough is dreadful" and I want to scream and say... well that's the only bit you can actually see, I mean - hear! The fatigue and the stiffness and the muscle aches you can't see, but they are just as real as the cough and just as debilitating day after day.

  10. joanng

    joanng New Member

    we should try to look how we feel! I don't know about you all but I feel like a 90 year old woman when I wake up. I can barely walk and think. I take a lot of time to make myself presentable, maybe I should just walk around looking how I feel, a mess. I see some folks in the doctor's office and they 'look' like hell but that's proably because they are too weak/sick to shower and clean themselves up. It takes me a long time but I can get myself to look 'normal' but not everyone can do that. What happens when I look normal? Everyone assumes I am and I get the 'you look so good!'. The good thing about that is no one in work knows the extent of my illness. They think I have 'back problems' and that's acceptable. If I told them about the fibro, I'm not sure how that would be received.
  11. lillieblake

    lillieblake New Member

    In some book I read about a person who was sick with fibromyalgia had a good reply to the 'You don't look sick' statement:

    "I'm not complaining about my looks."

    It gave me a chuckle, and I am remembering it to use when necessary.

    Love, Lillie
  12. skikat

    skikat New Member

    i hear the same thing. i was in skin care and head of co
    cosmetics for several years at younkers (like dilards).
    so i know how to make myself look good.

    i tell them...
    if you had as many bottles and brushes in yur cosmetic case as i do and th training to use them, yu would look the same way. then i laugh as if it were a joke. never upsets anyone, but they dont say the comment anymore after that either.lol

    GOD BLESS,,....ski
  13. JoFMS

    JoFMS New Member

    Funny you posted this - I am wearing my fm aware t-shirt today which says:

    'no i dont look sick, you dont look stupid either'

    Its always a tricky one - I think I have just got used to it now so it doesnt bother me as much.

    The one thing I havent got used to is when people say 'get better soon' as if it's somehting like the flu and I will be better within a week.

    We have to remember what it was like before we got sick and that we may have had the same reaction as other people. Difficult I know I went through a huge frustration phase with this - prob for about 4 years.

    When people tell me I look much healthier today - I say 'thanks, if only I felt it!'

    In fact someone only just said to me - you have much more colour in your cheeks today - I actually agreed with them as I feel I'm making more progress lately.

    There are lots of t-shirts available online - they are a good way of getting your point across without having to say it and they promote fm awareness too.

    I know how it feels to feel rubbish only to be told you look so good but lets look at the positive - if we look so good then we must at least have our looks! ;-)

  14. wildflowers2

    wildflowers2 New Member

    Okay- here are some funny come backs...........( someone sent me all of these-so I cant take credit )

    People like you are the reason people like me need medication.

    WARNING! All stressed out and I haven't choked anyone today
    (*** that one is SO ME*******)

    Did you eat a bowl of stupid for breakfast?

    I don't know what makes you dumb, but it really works.

    Oh crap! You're going to try and cheer me up, aren't you?

    If you have something to say, please raise your hand and put it over your mouth!

    with my poor memory I need a card with these on to keep with me.....

    hope you enjoy....


  15. texangal81

    texangal81 New Member

    My favorite is "who are you again"? *LOL*. Fortunately my co-workers can tell when I'm hurting. I'm not as perky and don't laugh as much. The big hurdle was my mom who finally has accepted that I really do have something wrong with me.

    But since I don't have a wide circle of acquaintances, I don't really get a lot of flak from people. I would probably punch them if I did and say "that will put me down for a week, but it was worth it" *L*.
  16. msnova74

    msnova74 New Member

    I am rather ashamed to admit, but when I am having a bad pain day i have been known to reply.

    "You look so intelligent, you don't look retarded."

    I get tired of that comment too.

    Normally I would try to educate someone, but I have my days.


  17. babyk902

    babyk902 New Member

    because for almost four years everyone's always been saying "you look fine though, what do you mean you're sick" until yesterday when my boyfriend's parents asked me if i was okay, or not feeling well because I looked so tired and bloated?! i was almost relieved and wanted to pour out my LIFE STORY, but couldn't get into it without sounding like a hypochondriac, just funny that someone actually picked up on it without me having to bring it up!!
  18. Leaknits

    Leaknits New Member


    I hear you. Wow, do I hear you.

    Sometimes I wish this d'd made us turn purple! Of course if that happened we'd likely hear "I have a friend who has what you say you have and she's/he's way more purple than YOU are...

    Urge to strangle, but it would take too much energy, lol.


    BILLCAMO New Member

    For a lot of us , when we are really extremely bad , almost no one sees us. When we aren't quite that bad we often put on our "Elanor Rigby" face without realizing it.

    And though we still sometimes try to explain what we are fighting , no one can truely understand unless they are. But , we still try to explain through our fog.......

    Yes , I don't "look sick" & neither do you.....I know that neither one of us is just lazy!

    Just my 2 cents worth ....for free .....LOL.

    Blessings ,

  20. Honora88

    Honora88 Member

    Have more people noticed that men judge how you feel is how you look? I'm starting to see a patten.