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Myalgic Encephalomyelitis Community
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Noone believes me

I m so fed.up of people ignoring or not believing I m I'll ..I went out last night with some friends I haven't seen for five years ...my m.e and depression has been at its worst ..my son's care is breaking down ..my mother died last year ..I just seemed invisible ..my friend mentioned an ex again and said she's met his new gf ...she supposed to be my mate and I've told her before bout this. ..noone asked how my son was and to make things worse one said what do I work as ..I said I m of sick ..."with what "!!!she replied in disgust ...I said am really ill with m.e ...oh you look really well and moved on to next person ...I m gutted...it took all my strength to go out and self talk ...I have..I will never get used to how this illness is disregarded how do people ddeal with this non validation all the time please

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Well if you wouldn't make a big deal about feeling tired and just get up and go on..... Yeah I know how you feel.

The worst thing you can say to me - "You're looking well/good." I hear - "Why are you not working you lazy bluffer?" It is terrible, especially since I had to go through so much hassle to get the powers that be recognise it and the disastrous effect it has had on my life so much so that when I lost my job and was retired on the sick I was told that had I not got conditions other than ME I would not have got my pension, despite the fact that I had been coping with those conditions for decades and it was the ME that left me incapable of tying my own shoes let alone work.

I remember the guy out of Bros having ME:

smoothradio.com/news/music/...

I remember the headlines of 'yuppie flu' and I remember thinking - "typical, has fame and fortune and now looking sympathy for feeling tired, what a fraud." - Ain't Karma a bitch :)

People forget because they cannot see the inside and the struggle, they cannot fathom what we go through so they don't even try - we are not interesting enough!

I met another woman locally who has ME and we meet out on walks. We both want to get it done unseen because its just another rod for our back - "What do you mean your sick, didn't I see you out walking?" It is hard for people to fathom that might be as much as you do that day or not realise that you can do that as there is no stress or noise - stick me in a chaotic environment and my brain fizzes shut and I can do nothing but sleep/doze - I used to live for and thrive in those situations.

We live in a society dominated by work and the majority of people define themselves that way, I know I did. Up until recently on of my leading questions was "How is work?" or if I met someone new, "What do you work at?" I was even doing it.

That said "Hi how do you pass your time, I sleep." isn't one of the more engaging conversation starters :).

I try not to speak about being unwell now - I've explained to all who know and care about me so need to explain no more, (other than an odd poor me session :) ). strangers I tell I'm retired as I didn't want to work my life away, which has the added bonus of them thinking you are some financial wizz as you sit back and relax while they are busting their guts.

With the odd snottery git who looks down their nose at you tell them - - " It is a complex condition which can in fact be terminal. It is a very debilitating condition that has huge knock on effects on the body systems such as the cardio-vascular....you know what I'll not spend all night trying to explain it, you probably wouldn't be able to comprehend the enormity of it not being educated in health and well being."

That's a shitty response to use but good enough for those who would belittle someone due to their own lack of knowledge.

Hope things improve soon, stay strong.

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Wow thanks at first thought you.were going to have a.go ...

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lol. No I don't have a go at people, life does enough of that in its own and doesn't need any help :)

I hope it made sense!

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They don't sound very nice tbh & very insulting implications. I totally understand. My ex best friend of 20 years didn't trust me enough to believe I couldn't walk down aisle at her wedding & wouldn't let me use disability pass when went out. In my experience I tried 3 things with her - having it out in a calm way like an email explaining the truth of your condition & situation & how comments make u feel. Or being more assertive when they make comments but tbh takes energy & stressful & why should you have to. Or finally if doesn't work when explain like it didn't with me, avoid them if making u feel worse to see them & try to meet new people with ME which I get is hard when you're ill or even kinder more understanding people they do exist. Big hug xxx

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Do you have some other supportive family? Sorry to hear u lost your mum 😢

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Hugs.

I empathize. I struggled when I was at work. Even close friends didn't get it, one a GP.

I don't really socialise with anyone anymore. Occasionally I make it to a local support group where they understand, but I can't walk unaided far at all now.

It helps to find online and itrw groups for invisible illness where you can rant away and make new friends.

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