Lets get this awful condition recognised ... - Endometriosis UK

Endometriosis UK

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Lets get this awful condition recognised as a disbility

Chibby profile image
12 Replies

I'm sure alot of you know their is currently a petition to get this awful condition recognised as a disability. Please click on the link and sign up :)

epetitions.direct.gov.uk/pe...

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Chibby profile image
Chibby
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12 Replies
worth71 profile image
worth71

just realised i'd already signed it - i've done a 7 hr working day today instead of my usual 4 hrs, and i feel like an old woman, i can barely walk with the pain in my pelvis, am scared to give in and give up work completely as self employed, not sure if i can claim anything :( xx

crystal_willow profile image
crystal_willow in reply to worth71

you can claim in theory, as long as you have paid enough national insurance etc through your self employment. I'd give the endo helpline a ring to check where you stand though xx

worth71 profile image
worth71 in reply to crystal_willow

i have paid class 2 contributions since being self employed, there is some gaps overall due to time off when having the kids, and also when i was employed but only part time and not earning enough to pay NI - i am going to try to keep going as much as i can, there are days that i simply cannot do but i find if i limit my hours to 4-5, then i can get through it, maybe when i eventually get my first lap i will know more then xx

crystal_willow profile image
crystal_willow in reply to worth71

have you checked out wheter there are banafits you may be entitled to like working tax credits? if you weren't earning enough to pay NI then maybe you would be entitled to working benefits... x

crystal_willow profile image
crystal_willow in reply to crystal_willow

wow bad spelling much ?! lol

worth71 profile image
worth71 in reply to crystal_willow

we used to get working and child tax credits, but now that my youngest is almost 15, and also hubby earns over the threshold, they base it on gross income dont they, so although his wage may sound ok, the actual take home pay just doesnt stretch far enough - i want to keep working, even if the hours arent much, i am gradually becoming a bit stronger and being a bit more selfish so that i can manage to work at a pace i can do - i'm a mobile hairdresser and i think being mobile is causing me more problems as in the salon you have adjustable chairs for height and wash basins, whereas i seem to spend a lot of time slightly bent at an angle, and washing clients hair over the bath is a total crippler - i would like to say to them 'could i wash your hair at the sink, or could you wash it yourself today as i'm in pain' but i never do, i try to hint, some even know i'm having problems but they just think its bad monthly periods, if only, they dont realise that by me washing hair over the bath can cause me to be crippled up for days after, the pelvis of a 90 yr old is what it feels like at times. i also feel if i dont wash their hair then i'm not providing the same service, but then again, if they want me to do their hair still then adjustments need to be made xxx

jess1478 profile image
jess1478 in reply to worth71

I would have to say to them that they can wash their own hair. I have a mobile haordresser and she never washes my hair. so new clients from now on, just dont bring up you doing it. say right "would you wash your hair then" and wait downstairs lol!

Mine wrecks when i bend over so i totally understand. x

crystal_willow profile image
crystal_willow

there was already a lot of discussion around this issue so I thought I would like you to the previous discussion as several issues were highlighted. some of the things discussed were the positive and negative's of having a widely variable condition defined as a disability officially (i.e. it could work against women at work if their employer assumes the woman is disabled when she is not)

we also discussed that under current law conditions aren't assumed to be disabilities but the extent to which these conditions affect that persons life.

Some people with depression have such severe symptoms that it is a disability, some people have it so mild that they would rather do self help and are not in any way disabled. The same goes for endo so it is assessed (by the benefits agency for example) on a case by case basis (whether the assessments are fair is another matter).

anyway here is the link to the previous discussion:

endometriosis-uk.healthunlo...

Kaye_Sedgwick profile image
Kaye_Sedgwick

I don't know if this is ok to post here, but if you are UK based and have 3 min to spare there is a flash mob happening in London on the 26th of this month to try and raise some awareness. There is a facebook group and donation page as well.

Details here: kayesedgwick.co.uk/flashofy...

I might have a MP at this event. Still awaiting his final answer. I hope he will accept the invite and a chance to talk to ask about Endo.

jess1478 profile image
jess1478 in reply to Kaye_Sedgwick

Thats brilliant i hope you have some success with this. If i was closer i would join you!

CharlotteS profile image
CharlotteS

There is an online potition! Its so un just that it isnt recognised as a disability.. I havnt been able to work for two years almost thanks to endo.. I am NOT giving up and putting up with it. I am fighting the Surgeon to make things right! x

Kaye_Sedgwick profile image
Kaye_Sedgwick

Hello folks.

I do hope Endo Uk will not mind me bringing this to your attention here.

IMPORTANT UPDATE DUE TO DATE CHANGE

I am hosting a Flash mob in London on Sat 01th September to raise awareness of Endometriosis. It will just take 3 minuets or 9 minuets over 3 hours for the whole day experience.

All details and how to join in are here: kayesedgwick.co.uk/flas...

All are welcome, friends, family all you need to do is wear yellow!

Thank you xx

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