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Ehlers-Danlos Support UK
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Trying to get back to work but it's hard

Well I'm a newby in this hypo-ehlers lark. Trying to get back to work but it's a daily struggle of either pain or fatigue. Work agreed to reduce my hours, so I started last week working mornings but by Friday I was done I had to go home as couldn't hack it. Now after Friday they've added to my risk assessment that I can't be left on my own with a child. Which I understand but when you've gone from being a go-getter doer time get the job done. To have all your day to day duties taken away lifting up children for a cuddle not aloud to do that. I just feel like a body in the room totally useless. I'm now questioning if I should just go back off sick and try n find a job less physical as at the moment they won't allow me to do my job and I can't see that changing as they now my risks. God!! I hate this as I'm mobile and can do many things it's just they are worried I'm gonna dislocate or something at work. Really don't know what to do about my life at the moment. Should I stay in work or go off sick and try and find a job to suite my needs.

4 Replies
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Hi aliD47

Life with an illness that does not allow us to continue in a chosen job we both enjoy and get great pleasure out of is hard but if your illness does not allow you to continue then maybe it is time to reassess your job and consider your long term health and wellbeing.

You going back to work will of been a big deal and dealing with the daily pain and fatigue on top of the changes will be taking it's toll on you physically and mentally and will take a little get back into.

Looking at your job options the way you are doing is a positive thing to do, this time you have to consider your body which might be a first for you.

If your employer is comfortable with you doing your job and you can continue to do the reduced hours after getting back into the daily routine that's great. If however you continue to suffer then it's probably time to look at something less demanding on your body.

Is going off sick a long term option and how is this going to make you feel. If you cannot continue in your current role with reduced hours and assistance then maybe looking for a new job sounds like a plan.

Maybe best not to rush into anything until you have settled down in your job and considered what else you can do and applied for new jobs and secured a position.

Take care and good luck.


Thanks for the reply, I've decided I need a bit more time to get my act together so I'm staying off sick a bit longer while I figger all this out. Need to get emotionally and mentally ready and going back to work I realised I was ready. So I'm gonna get my are to a swimming pool at my legs as strong as I can and hopefully the endorfins (oops spelling) will help with my mood. Added to that walking my dog. Then I will try again at work with the reduced hours and fingers crossed I can carry on.


Great πŸ™‚ be careful not to over extend your joints, I started walking after diagnosis with a slight bend in my knees until I was satisfied I was not over extending, I had previously no idea I had EDS. Same for my arms (elbow), had two large dobies at the time and rather than pull them back if they pulled on the lead I just changed direction it helped enormously.

Take it easy and gently.


Just seen my spelling mistakes. It is early. But you understood me.


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