"But you dont look sick"

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Mar 9, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi folks

    I'm new to this board :)

    I was diagnosed with CFS 2 years ago, but after my initial illness I recovered to about 80 - 90% and was living a pretty normal life - working, walking after work, the odd glass of wine etc. I still had to manage my tiredness and get to bed early, and cope with the odd flare / relapes every few months that kept me in bed for a week or 2, but it was manageable.

    Well, about 8 months ago things took a turn for the worse and over time the balance shifted - the bad days now outweigh the good days about 3 : 1. This means I've had to stop working, which I am finding extremely upsetting. I'm having horror thoughts like "What if I never work again?"

    And if one more person tells me "But you don't look sick" I swear I'll punch them in the nose!

  2. kalley167

    kalley167 New Member

    I hate when people say this and other things, like " I am tired all the time too" or "I have aches and pains too". It makes me mad. Fortunatly I am still working but I have bad days.I go to bed exhausted most nights and sleep poorly.
    I have taken to not even explaining my illness to anyone. I just tell them I am tired thats all. Its just been easier for me that way.
    Welcome to this board, it has been a great support to me. Hope you find it helpful also.
  3. kaiasmom

    kaiasmom New Member

    It can be very difficult to deal with those people out there who "don't get it". At times, I almost wish I did look sick - then people might not treat me like a hypocondraic. But, life is what it is.

    I hope you will find the same support & companionship here as I have. This site is a wonderful place to come and feel "normal". But most of all - accepted - for who you are - not what you lack.

    Take care,

  4. Michelle_NZ

    Michelle_NZ New Member

    Thanks for the welcome

    Prickles - I did a Zoology degree some years ago - and I used to keep geckos and go to the Herpetology meetings! I really love snakes, but unfortunately we dont have them here in New Zealand.

    Good on you for continuing on with your life while managing this illness.
  5. CinCA

    CinCA New Member

    And cheers to you in NZ! Sorry to hear you aren't doing well, but I can certainly relate. It's actually scary now that people ARE noticing (my mom's here and has said how run-down/thin I look)...I liked it the other way...but I am still really thin from a 5-6 lb. loss from a flu bug earlier in the winter. I've been in up-and-down flares ever since, compounded by the fact we recently moved for a job relo, something I initally thought sounded good but ended up being very unwilling to do. So lots of stress and transition, both of which have been very detrimental to my health. But I'm still among the land of the living, and I am slowly, slooooowly regaining the weight. :)

    Honestly, I don't even tell anyone about CFS, and I do all my complaining/venting/asking questions on this board or to my doctor these days. It's easier than dealing with the "but you don't look ill or act ill." Yeah, like I have a choice to sleep all day with a 4 y.o. to take care of and zero help apart from her preschool. Even hubby thinks I just need to eat more and exercise rigorously. This is despite definitive labs showing heavy metal toxicity, bottomed out neurotransmitters, very low antioxidant levels/high toxins, etc., and many classic symptoms of the CFS profile. So as I said, I don't say anything anymore and just try to get through each day. At least my doctor believes me and gives me a big hug when I need it! :)

    Again, not meaning to vent, only to say yes, I understand. I really hope you find answers, and I'm glad you found this board...it's a great resource!

    [This Message was Edited on 03/09/2006]
    [This Message was Edited on 03/09/2006]
  6. livin4him

    livin4him New Member

    Hello. There is a short little booklet called "But You Look Good!" published by a lady who has an invisible disability also and was sick and tired of hearing this also. Her website is www.myIDA.org. It is a great little booklet to give out to your friends and family, it also just helped reading how it feels to hear this everytime we see someone.

    It talks about what our friends and family can say that is encouraging and also what is discouraging. One of the excerpts from the booklet: Even though most living with chronic conditions do have "good days" in between, many have very few! Therefore, when we see them out and smiling, we should not assume they are doing so, because they are have a "good day." Instead, we must understand they cannot always wait for a "good day" to get out, because they need to get their groceries and run errands just like everyone else. We must recognize what a great effort it takes for them to get out and about, wheny they are feeling so badly. What is more, we should realize that because of the exertion, their symptoms will likely be exacerbated.

    Take care.
    [This Message was Edited on 03/09/2006]
  7. cjcookie

    cjcookie New Member

    I know so and so who also has Fibromyalgia and they work full time. The response I want to say is "I know other blondes and they are not nearly as stupid as you". I usually just tell the person that there are different levels of this just like other diseases and that person is lucky they can still make a living.

    Another favorite is "if you would just get up and do things, you would feel better."
    [This Message was Edited on 03/09/2006]
  8. bluestanglady

    bluestanglady New Member

    Welcome to the boards! I'm sorta new here too. I know exactly what you're talking about. I get that all the time too. I'm like some of the other posters -- I don't even talk about feeling bad anymore (except to hubby, but he can usually tell when it's a bad day). I can't work anymore (I used to be a court reporter). Of course you always have those who think because one day you can go out and do something, then you're healed! I've had a really bad flare-up since last week and haven't been online in about a week. My sister who lives about a half mile from me hasn't called all week. (She usually waits for me to call her for some reason). I haven't felt like even picking up the phone. I know when I do talk to her, she's going to say "well, why didn't you call and tell me!" I want to say 'well, why didn't you call and see why I hadn't called?!' I still don't think she really understands how I feel when these flare-ups hit. I can't even stand the sunlight when I have a flare-up. I don't think people truly understand FM unless they have it and I don't think they ever will understand no matter how you describe it to them.
  9. kch64

    kch64 New Member

    So far, I can honestly say no one has said that to me.

    However, I've never "seen" pain myself. I've seen blood, and bruises and such, but I've never "seen" pain.

    Pain isn't seen it's felt. So the next time someone says this to you, PINCH THEM REALLY HARD and say, you don't look sick.

    (BIG GRIN).

  10. livin4him

    livin4him New Member

    that's a good one, lol, I'm gonna try that one. Thanks for the laugh.
  11. kch64

    kch64 New Member

    Glad it made you smile. I think it's good advice. I may try it if someone ever says it to me.

  12. auntcon

    auntcon New Member

    this is a great place to feel accepted. I have a sister who is always making me feel like she thinks I'm "Faking"
    the "you need to exercise" , "I'm tired all the time too' and then tells me her busy schedule... if she felt like I do she'd stay in bed all day too... it's hard enough for us to allow ourselves to accept what's going on with us. and not be tempted to over do it. grrrrr

    I wonder if there is some other "job" you can do without persueing something outside the home. This illness does cycle so you may still have some working days ahead of you.

    great thread... we all get it and it helps to hear how the others cope too.

  13. 69mach1

    69mach1 New Member

    the ex and his stupid stripper gf..only like 24 years old at the time he 34..mentally 15 years...top...becase then that menat he had to pay spousal support...well i was married to this person for over 14 years 171/2 total after the divorce the longest oone.

    anyways welcome to the club here..

  14. Sheila1366

    Sheila1366 New Member

    I got it from website for people with autoimmune disorders.
    It's a pretty white bumper sticker with pink and purple coloring.

    Be sure and wear protective gloves on those fist when you start to punching.Then have at it.


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