Does anyone else feel like they shoul... - Fibromyalgia Acti...
Does anyone else feel like they should be ashamed of there disability.
I suppose I should have expanded on that comment, DWP ESA/DLA the newpapers and ignorant friends relative and employees, I'm seeing more nagativity than support. I dont go out of my way to talk about my health with anyone ... why.
People are not intersted , its a selfish world . I never talk about it only to hubby and friend xxxx
i know people look at you as though you are made because of it, but ive found after chatting on here that it is because others do not know what it is and how it makes you feel. ive taken advice from here i now carry hte info with me and explain to everyone i need to what s going on with me including the hospital consultant and the lady from the benefits agency it has helped
Because it cannot be seen, it doesn't exist is the general concensus of opinion with the general public and the Govenment.
I used to be very worried about what people thought and so many people dont understand even those who knew me well called it a lazy made up condition .. Now i hold my head up and smile we know better xx gentle dyslexic hugs
this is like ms , you cant see it , but ms every one knows about , and if you were to say to people that you have ms , they understand , but mention fibro and it whats that, never heard of it , even my family cant be bothered to read up on it , i must say i do have a wonderful husband sue
I never feel ashamed about having Fibromyalgia and CFS/ME, I am totally at ease with the way I am these days. However I lost all my friends because of the conditions, they lost patience with me cancelling our get-togethers. That wasn't nice I must admit. Now I have friends with Fibro so we all cancel at some time or another! I would sooner have friends who understand than people who can't tolerate us. I am very lucky as hubby and my children all understand, I know it's not like that for many and it must be so difficult. My employer didn't understand either, so it was a relief when I officially left work and didn't have to try to convince him how ill I was at that time. People don't understand what they can't see which is why it can be so difficult. 
I hate dealing with two much money, (even more than some), because I get flustered no matter if I have everything written down and looked over several times, it's embarassing, I'm considering having nothing to do with it ( as much as I can), and this only happened this past year and worse so since this past 3/4 months, (getting worse every week), you want to see the way some of the shop keepers, bank tellers look at me, keep saying I'm not going into the bank again, but I just march in there next tiime, and don't seem muddled then because I have only a simple thing to do, they still look at me though they're mostly friendly, so I think these are the people that make me feel like I've dropped off another plannet even though i've mentioned an apology at least a few times and explained my confusion is because of my fibro, none of them I guess has ever heard of it.
Hi i dont really feel ashamed as such but on the same hand i dont really talk about it much either i went to see my 2 best friends yesterday for good old catch up and they both said so how are you and your fibro but i just sort of brushed it offf i jus said oh ita worse but i dont really talk about it they said i shoild but igot off the subject quick so i dont really talk about it much i think because there are so manty little things connected to it that i have it takes so long to get it over to people how much there is i dont wanna start as they will jus get bored listening so it is jus easier to say yeah i am ok when really i am not at all most of the time in fact all of the time lol
But it is not to be ashamed off you cant help illnesses that is just the hand we have been given but i jus feel i do have to hide it which is so wrong too
love to you Diddle x
Your so right, it's just by not talking about it or the silly responses like "oh yes i ached getting up" or "yes i.m tired right now" or been told there's nothing wrong with you and with this DWP thing, I'm not ashamed and yet at the same time i'm behaving like i am and dealing with it by hiding it... The condition is invisable but so am i now because there isn't the empathy or understanding.
I figure if people dont ask that they dont want to know so i dont talk about and if they ask if i'm ok i say yes because its easier so how are people supposed to know how debilitating it is.
I dont think we should be ashamed i just think that we kinda hide it somtimes which is counterproductive ?? or something like that
I thought it was good to question how we handle our condition with others and if we should question the difficult question of how to handle the subject with others.
xx
Not ashamed of it, just ashamed of people who dont understand
and dont seem to care, so we dont have anyone to talk to.
i'm not really ashamed, but i am really guilty because i cant really do anything anymore. My partner does the cooking, my daughter the washing, ironing and cleaning, and my son does the heavy stuff, like getting my mobility scooter out of the car. My partner gets angry with me because i keep saying i'm sorry. He tells me that i have nothing to be sorry for its not my fault that i'm ill.
Not ashamed at all, it's just the ignorant small minded people who think as they can't see anything wrong...there is nothing wrong. As i say, "don't judge me till you've walked my path", so very true. I tend to keep things to myself, but my small trusted circle of friends know how if affects me and do their best to understand. I always say if you've never experienced the pain of a bad back or childbirth how can you know what it feels like....seems to hit a mark as all are mums lol. focuses their attention a bit!!
Why be ashamed, the dhss/atos etc etc seem to make anyone with a permanent illness feel guilty...they forget thought many of us have paid tax and nhi for years...isn't this what part of our contribution is for??.
We didn't ask for this wretched disease to strike us, neither did anyone with any permanent physical/mental disease...hold our heads up and stuff the rest is my attitude...
Jan H xxxx
Hi all, this is my first time making a comment so here goes! Firstly I'm dyslexic so please be patient with any spelling mistakes. I have never felt ashamed of having fibromyalgia & arthurits just grieved the person I was. Dynamic,, ambitious, perfessional women.....That took a long time to come to terms with but now I feel optimistic. I live on the Isle of Wight and we have a very forward thinking pain clinic who believe in Fibromyalgia and offer a pain management course.This and my GP who I have worked together over the past 3 years I'm now coming to terms with this horrible condition which manifested itself after 3 long episodes of bullying from I'm ashamed to say female managers.
People who have the power as in DLA ESA etc don't care that we have this condition, they just have to meet their targets and cuts imposed on us all! They are not medically trained & look at applications as possible con's. With DLA it's not ''what wrong'' it's how are you going to use the money to make life easier.
I honestly feel now that I will be able to manage this condition and live my life fully..... I know it's so hard to think it can get better. I have had many dark dark days but over a period of a year I have slowly increased my exercises which has really helped so much( In this I mean from not being able to get out of bed to the bathroom unaided I can now take my dog for a short walk) I hope this message is one of hope and if anyone would like to know more about pain management please message me.
Love, light & very soft hugs Jen x
Jan H I love your answer. ''you go girl & keep fighting''
Hey JanH
I just wanted to say your post was flawless. So please don't ever worry about the dyslexia. I admire the courage and strength it must have taken to work hard and go from being unable to going to bathrm unaided to now being able to take the dog for a short walk. You sound amazing.
And ps I would love to learn some pain management tips! I am still waiting for an inpatient rehabilitation/pain management programme and a long waiting list it is proving to be!
I am still quite new to this forum. Do I keep replying to posts to contact you? Sorry for being a bit backwards on the technology!
Purple blossom xxx
I just wanted to reply to this post to let you know don't ever be ashamed and don't let anyone let you feel like that. I do understand though what you mean that people just aren't willing to take the time to understand to listen etc and therefore often no one but a fellow sufferer generally understands what you are going through. That is their ignorance though & their loss....they've lost a valuable friend in you
I am still in a world of pain exhaustion and uncertainty i was diagnosed and it was never explained to me fully i still feelazy and idle and stupid. cos i cant cope with anything anymore.
I'm sorry to hear that but you have us here so dont give up, i still have moments when i feel lazy, like now, been on FB and here but really i'm taking a moment for me and doing research on on FM/CFS, go check out the two web sites i've blogged 10 mins ago, they might help. since having joined this site i've had the courage to "come out" on FB and post lots of things about FM. Its a difficult journey and for me not having the tolerance and respect from others has a lot to do with the depression, let alone the DWP/ESA situation and their discrimination but even when i'm down i still find a little bit of fight somehow.
I hope you find peace and chat to us here xx
yes
hi bunny i feel soashamed of being so upset because reading thru the blogs i am very very lucky I have a wonderful Gp who is understanding and sympathetic it has been me refusing to believe i was ill because it was never explained fully. and i have done serious damage by overdoing things. i now have heartfailure to contend with as welll for all my sins lol. my gp has already sent me to rheum spec and was not happy with progress so has manged to nudge me into a clinic already which reading on here i believe is increible for london area. she also took the time to make it clear to dss and dwp dla that i am not able to walk more than a few steps and am in chronic pain needing care. this was before heart trouble. I now get higher mobility dla indefine and incapacity indef as well as carers Ifeel lucky as hell now having read the struggle others are havingwith docs and benefits etc. i truly wish u had a doctor like mine. gentle lovesand ugz from me
but that is good, we all on a learning curve so for you to go from seeing the negative to the posative is great very best of luck to you on your journey, I think we all struggle, I know I do. Just keep blogging, I know its done me the world of good.
xx
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