New here

[Bowski]

Hello new to this but any advice for EDS and work would be helpful

[Country4eva]

I have workedcsince age 12. Military vet and registered nurse for 18 years . EDS took me out in 2010. If you need disibility, dot be ashamed. You have to listen to your body. Gentle hugs

[Jay66]

I struggled mightily to keep working, reducing from 5 to 4 days to 2 days to 1 and a half days, then finally giving up. I could, with strong painkillers, do 3 to 6 hours of work, but then cannot even drive myself home afterwards, and need to lie down for at least 2 days afterwards. This pattern was not sustainable, and I left my (teaching) job, but I am lucky as my OH earns enough to just about keep us both. I have not tried to claim disability and don't think I can - I can certainly stand or sit in an ordinary chair for a while, but not every day which is what is usually required. My fingers and jaw can simply seize up on some days. Despite this, I look a picture of radiant health!

My only helpful suggestions are 1. involve Occupational Health, and continue involving them if their suggestions are not carried out by those in charge (my Headteacher just ignored them, which is not illegal). 2. if you are feeling nauseous from pain at the end of a day, make sure your employers know 3. if you need to leave, don't do what I did (I just went) if you have a professional job - go through the long winding process to get retirement on the grounds of Ill Health 4. Whilst you are entitled by law to 'reasonable adjustments' to help you stay in work, in real life this does not always happen, and you'll be exhausted and possibly out of a job if you try to insist on your rights. So my first HT was fine with me teaching however I felt comfortable, but my 2nd HT insisted that I had to teach standing up and then walk around the classroom endlessly. When I pointed out that that was painful, she just insisted that it had to be so or I would be marked down - an endless drip drip drip of things like this forced me to go, under her constant threat of marking my performance down and then she would have simply sacked me for 'poor performance'.

You don't say what aspect of work or what type of work you are talking about, so this may not be at all relevant.

[Bowski in reply to Jay66]

Hello

Many thanks and very helpful. I am a nursing sister. I have previously been off work for nine months and managed to go back with the help of the Shaw Trust advisor who spelt out to my managers my rights and the disability discrimination act. Some reasonable adjustments were made(:-)) I was given a computer assessment !!!

Fellow colleagues were very unkind when I went back to work and I was not spoken to for nearly six months .. I was given the idea that I was back but likely to be laid off as I wasn't up to the job . My confidence hit rock bottom. I struggled on for over 18 months but last January the winter hit and the chest infections started ... I've been off ever since and this week have occ health who has mentioned ill health retirement .

I will add that I've not had so much as a card to wish me well since I've been off sick and the thought of returning to such a non caring workforce is quite daunting to say the least .

[Jay66 in reply to Bowski]

Hi, you have my respect for doing such a difficult job with EDS - I would have imagined it is one of the hardest jobs for someone with EDS except perhaps landscape gardener! Colleagues' reactions can be so disheartening - I tried to explain what was wrong with me, but they didn't understand - part of the problem is that this disabling condition is erratic and invisible.

Also, nurses that I have known have seriously suggested that the only thing EDSers need to do to get better is to get/stay thin and do lots of exercise - if that is still a prevalent idea then you would not receive much empathy. I think that is a hangover from the whole Benign Hypermobility Syndrome label suggesting you suffer a bit of pain in joints and that is all. I wish...

The whole process can badly affect your self confidence, especially when your performance is continually being judged and you are battling pain and fatigue as well as unhelpful management.

In possible defence of your colleagues, I have known teachers go off sick with stress (a remarkably regular thing) and on a couple of occasions, HT told their colleagues not to contact the person off sick - there is sometimes a concern that any contact from colleagues (even a card) could be construed as harassment and add to the stress.

If I were you I would grab the ill-heath retirement possibility with both hands, and prepare to move on with your life. I know just what it is like to have to leave a career (I have had 2) that you have poured time, money and all your effort into, not to mention one you love doing, but your health is so so much more important.

[chrissie-portland in reply to Jay66]

You definitely are entitled to claim PIP: that is not means tested.

[Vinnytessa333]

What type?

[Bowski in reply to Vinnytessa333]

3