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Fibromyalgia Action UK
43,162 members55,260 posts

Look so fit and well.

My daughter and I are both tall fit looking people and we have the same trouble frequently.We both have hypomobility and fibro and my poor darling had a mechanical aortic valve replacement some years ago .she is always on the go. The remark is always you look so well I feel like saying try walking in our shoes sometimes , hey ho!!!soft hugs to allx

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If the need should arise you should speak out, people just don't think and unless you tell them they draw their own conclusions. All the best to you both. xx

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I would have said the same until I watched my hubby struggle with ME. When he managed to stay awake he looked well. I now have fibro and understand exactly what it is like. Sometimes as Lou says you have to speak up, people will never understand if they don't know what's wrong.

I hope your daughter and yourself always look well and fit :)

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I have come across this but I soon put people straight! Thank you for sharing.

I want to wish you and your daughter all the best of luck.

All my hopes and dreams for you

Ken

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Hi

I wish i knew how to tell people, because I look ok, most of the time i am really not.

Emma

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Hi Emma

I just come out and tell them what I have and they can either accept it or not? I am always very empathic to the suffering of others and I would like to think they are to my problems as well.

I think that I do have an advantage (if that is the right word?) as I have so many other health issues and people can tend to see them or relate to them anyway.

I want to genuinely wish you all the best of luck.

Ken

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I think it's time we invented a syndrome for normies. the "but you don't look sick". It already has its own website and speaks of so much ignorance, some of it wilful. Just because we don't carry white sticks or wear plaster casts . . . .

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I find it really hard sometimes, some of my friends I'm sure think i am making this up, i have only been diagnosed recently, but have been feeling really unwell for about nine months in a lot of pain, but i look ok and used to be really active i find it very difficult and end up thinking is it in my head and get a grip, but cant even do that as that is going as well LOL.

Em

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Be assured it's real. There are now 15000 members of this site and overall an estimated 1 to 2.7 million sufferers in the UK (up to 5%). So do try to forget those fair weather friends and get on with looking after yourself. You cant afford to waste precious energy where it won't do any good. And yes fibro fog is real too. Lots of lavender scented hugs :)

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Thank youall so very much for your kinds replies and good wishes. This is such a comfort and help and lifts my spirits so much.Hope everyone is as well as possible. It's avery windy day on the island today x

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Hi I'm sick of that comment! I've just had surgery for kidney cancer and the staff were totally caught unawares due to going more on what I looked like than what I suffer from. They underestimated my needs and ended up having then running around saying oh why do you need this? I have PA, AS, fibromyalgia, had Hyper mobility syndrome, asthma now Cancer and because I'm not fat, scruffy and still look after myself and eat well they can't see it.

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Oh Paula what a shame, like you I have asthma and hyper mobility and am carefully growing a large hernia which Igot an op. for suspect stomach cancer I was lucky but they won't touchhernia as I don't do anaesthetic well and the op doesn't work too well Any I am quite long in the tooth but I send you all best wishes and gentle hugs and hope things will pick up in the future for youxx

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have you been checked for marfan's syndrome?

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I seem to remember my girl and seeing a lady consultant in London .Was found that my daughter had rare gene and was noted to some research place in Paris I seem to remember we were checked for marfans think we were borderline. Thanks for your interest!

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