"Well you don't look unwell!!!"

Hi all, just wanted to share this with you. I'm sure many people have been told that they seem well, that they don't look in pain/ fatigued and manage to do everyday things! I have..many times. It has made me feel upset, angry, annoyed and made me think it's maybe all in my head, which I now know it isn't. I have tried to explain to family and close friends what Fibro is like, but no matter how empathic they are, they'll never truly know what this life is like and the daily struggle we often face. I recently found out that a lady who I've known for several years has fibromyalgia and has had it for many years. I was shocked!!! This lady is a very smart, lively, vivacious woman. Always friendly, outgoing, jolly, always has these 4 inch heels on which I haven't worn in years! I only ever see her when maybe once a month and she's always the same. After talking to her daughter, who didn't know I had Fibro, she told me how her mum struggles daily and the pain and fatigue she suffers. I looked at her mum and thought, well, she seems ok and doesn't look tired or in pain at all, how does she stay so well and I'm like this?! After telling the daughter I also had Fibro she too was shocked!! She then said I looked so well, and always am so happy, cheery and energetic. Yes, I suppose I am! However, she only sees me when I'm out playing darts, she doesn't see the pain I'm in after as I've sat down too long. She hadn't seen me in the shower at 6am trying to loosen off before my kids wake up. I realise I've done to her what people do to me, and innocently so.

Now when I end up telling people about my fibro, I'm a lot more understanding of their point of view and try to explain its often a hidden illness...I'll try not to be so judgemental from now on xxxx

16 Replies

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  • Hi Angiedecks,

    Interesting read. :) I think one of the other things is that we always act cheerful and as naturally as we can when we're around other people, so these people wouldn't know any different.

    Hugs and sparkles,

    Fay xxxx

  • So true, we really do x hope you're having a good day, gentle hugs with cherries on top xx

  • Hi Angiedeaks

    I sincerely hope that you are feeling as well as you possibly can be today? Yes, that was a very interesting read and it really shows how easily we can do this ourselves? I had the opposite reaction at my Thoracic appointment on Monday. My Specialist opened the door and I waddled in with my tri-walker and she said, 'oh dear! You sit down you don't look too good today!' Needless to day I felt rough all day after that!

    All my hopes and dreams for you

    Ken x

  • Yes I know what you mean there ken, or when they say "you look awful" when you're having a good day! Haha. Hope you're feeling well today Ken x

  • Ken, you always look . . .

    35

  • D'oh, but it's true! it's getting closer.

  • If this was my age coming down I'd want it to stop somewhere soon.

    34

  • How true is your read I was sent to see a pain manager consultant a few weeks ago before my appointment a few people i new and friends new said he had said the pains all in their head and they needed to do more which made me very nerves on going to see him. But on the day i went he came out to meet me and i had been in so much pain that week was ready for him. So i went in i said before we started can i just say if your going to tell me its all in my head in not going to wast your time or mine. The look on his face was shock but was not being taken as a time waster He asked me to carry on at the end of the consultation .He said he dose not call it fibro he calls it cronic pain and i have seen him twice and is puting me on a managment programe fibro10

  • Hi, people use stupid phrases don't they. Pain is all in the head is one of them. Everything is experienced by our brain but the is because its the brains job to organise everything and the brain happens to be in the head. The phrase he used suggested that you (we) imagine our pain. He probably didn't even mean this but the phrase is just a lazy way of communicating quite a complicated concept which involves managing our pain.

    Your helper has probably not ever experienced chronic and relentless pain - pain where there is no beginning and no end it just is the total of a permanent existence. It is very hard to manage your pain when you can see no end to it. Its not impossible and I think there are probably ways and I am working at trying to find solutions to help me that I will happily share if they work.

    Chronic pain is a lonely place because no one can experience what a person is going through even if they suffer themselves. We are all individuals and experience pain in our own individual ways.

    Has your pain manager ever asked you what its like for you?

    I told my doctor what's its like for me and he shrugs when I talk to him now. That's always reassuring (NOT).

    Thank God I still have a sense of humour.

    Good luck

  • That's interesting that he doesn't call it Fibro but chronic pain, it definitely is chronic pain. Will u keep posted what your management program is? I don't see anyone now apart from GP and manage to manage it myself, so far anyway x hope u keep as well as possible x

  • Oh my!! If I had a pound for every person that's told me 'You look well!' I'd be a billionaire!! XX

  • Hello Angiedeaks, I dont try to look well, happy, jolly or anything else, life hurts, with pain , fatigue,, and the total energy used can be used to keep you awake, or talking.

    I sometime look really pale and walk slowly, and it shows on my face, I think the world should see you how you are and how you really feel, so that there is nobody thinking you are only a bit sick, when really you are very sick. I hope things for you get easier, and have you tried radox (blue box for muscular) in warm water and slowly sponge it down you tired muscles, or even (radox therapy bath it blue coloured in a bottle) again diluted, and let it gently run down the tired muscles, it works and helps you feel better, for now ttfn

  • Hi scouser58, yes a bath or a hot shower is a good relaxant and pain reliever, no don't use the radox bath soak but will try it. I know what you mean, I'm the opposite though, if I let people see and feel my pain it makes me feel worse, it does catch up with me eventually though. for some reason I'm managing a lot better in the last 6 months than I have in 10 years! Think the amitryptiline are helping and the exercise. It's taken a long time to get here, never had a pain free day yet but the flare ups aren't as long and the pain is more manageable, just learning to live with it really! Hope you stay as well as possible, hoping for more good dayside you x

    Angie x

  • It's a terrible disease, it is hidden on the outside. On the inside it's raging. Don't feel to bad sweetheart, I think as we grow older and experience things we grow smarter and learn that unless we have walked in someone else's shoes we will never know their story of what their journey has been, beginning it pain, or the way they may act. When we are young we do tend to be judgmental. I know Fibro has taught me a lot of things. Pain, patience, and endurance. Hang in there sweetheart!!! xxx Mitzi

  • i have found that when I am feeling well I bother more with my appearance, hair make up and clothes etc. When not so good then i don't go out and rarely have visitors only family see me when i feel bad.

  • That's a very interesting insight. I also get told I look well - it is because I always wear make-up :) and try to be cheerful. Good for the lady in the 4 inch heels :) I wish I could wear them too but I would be a public health risk if I did :)

    It hurts when I move so that is when people know there is something wrong with me.

    When I explain fibro to people I tell them that it is like being forced to walk bare foot on broken glass all day and then sometimes carrying and extra 120 pounds on my shoulders as well. And that the pain keeps me awake all night. That seems to do the trick.

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