Acceptance and Labels......................

Acceptance...now that's a scary word.

I was filling in a form last week and reading the questions out loud to myself.

Do you think you have a disability?

'No'

'yes' my visiting friend said

'I'm not disabled'..... I glared

'you have RA, and therefore on forms. telephone calls, with departments and agencies you have a disability, and you need to accept that'

'I am not disabled'

'If you say so' she said

So what is it about labels?

I have no problem saying I have RA...... but disabled....no way...you're not hanging that label on me.

I have no problem saying I am retired, I love it......but a pensioner..no way....you're not hanging that label on me

When I say I have RA people (sometimes) say

' oh dear', or 'you poor thing'

which is almost sympathy and understanding

When I say I am retired people say

'oh lucky you' or 'oh lady of leisure now then'

When I say I am a pensioner and I have RA people say

'sit there dear and I'll get someone to help you, did you get that?

I SAID SIT THERE DEAR AND I'LL GET SOMEONE TO HELP YOU.

I rest my case....................

[Hidden]

oh dear two out of three... which do you dislike the most age discrimination or ra discrimnation??

[Hidden]

I think RA discrimination because it feels like a double whammy.

[emandedmum]

I can't accept that having RA makes me disabled because I am not completely disabled by it...yet I've filled in my DLA form again, this time round was no easier than the first because I still feel like a bit of a fraud. Sometimes I am unable to do lots of things because of my RA but at other times I'm pracitcally normal, it's just so disheartening to have to admit that at times that yes, I am completely useless!

[Hidden in reply to emandedmum]

Hi Jo, It's not easy filling in the forms as your right we do feel like a fraud.

When I first filled out DLA forms I was refused, then I tried again this time with help from my RA nurse. She explained that when filling out the form always fill it in as your worse day, and always add some days are better than others, and that's what I did. This time I was offered help.it is hard to have to fill them in as your admitting to the things you can't do anymore and it suddenly hits you. Yes I do have RA!!

mand xx

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I have had this dilemma too.. because take today for instance, I feel fine, ish, you know almost normal.. but over the weekend, weak as a kitten and no energy and achy I thought I was going to go for a flare? So what is disability and need assistance all about.

[Sharon56]

Yes to all of the above. I have just received a set of DLA forms as mine runs out in July. I dread filling them in because as Julie says some days I am almost normal and some days I feel dreadful and weak. How do you put that on a form. Last year I was in hospital and the social worker who worked for the hospital team helped me to fill it in.

[Hidden]

It is hard to admit we have RA not just to other people but to ourselves too.

when filling in any forms such as the DLA ones I was always told to explain my worse day but to also add that every day is different some better than others.

mand xx

[Hidden]

I agree with you all, especially about the good days bad days.

Never forget how life has changed since RA, not just by pain and flare ups but by the total unpredictability of the disease. How many times have plans gone awry because you suddenly had a bad day or flare?

Prior to the RA when I had spinal compression and could not walk more than 75 - 100 yards without pain or my walking frame, I had completed DLA forms and was refused, I appealed and that was turned down.

With the RA I was advised not to complete the form myself, I had a lovely lady from the pension service come round to do it for me and I was awarded DLA first attempt. Her advice was all questions must be answered as if it were your worst day.

eg: can you do your hair?

Yes ....my hairdryer is too heavy so I balance a travel hairdryer in the palm of my hand and move my head back and forth accross the hot air stream.

'so you can't do your hair,' says nice lady

'yes I just told you I can'

'no you just told me how you improvise because you cannot do your hair in the normal way'

Q: can you do your hair? A: no

Hope you get the idea now, and always get a professional to complete your forms guys and gals, because you will always sell yourself short if you do it yourself.

[zimmie]

Any thoughts as to how we will all fair if the coalition introduce the DLA medical.

Will it happen i hope not, Don't know if any of you have ever been to a medical but it isn't good in fact it's down right degrading.