Giving up on work?: I'm looking on giving up my job... - LUPUS UK

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Giving up on work?

5 Replies

I'm looking on giving up my job, I physically can't do it no more with my health situation, I have lupus and Mctd. My job is doing admin part time, not alot of money at all I take home £500 if I'm lucky, I know it's not a hard job but it is for my at the moment, I'm constantly in pain, and constantly off on the sick.. I'm not sure what to do my heads everywhere, only 21 so a big thing for me to come out of work so young after being there for 4 years I don't want to feel like Iv failed already..

Iv appealed for my pip for the third time just waiting on the response but more then likely will be refused again.

Any advise would be great full

5 Replies
Shann07 profile image
Shann07

Im in the same situation. I work part-time in admin this past 20 yrs, Im 38 and currently off again on long term sick leave. Its such a difficult decision as like you say the money is not great but its also like giving in to lupus and to be honest it makes me feel sad. Ive battled on several times through really bad flares to make it to work but now Im off nearly a year I dont feel I can continue like that. Is your employer supportive? Mine have been but at this stage they have more or less shown me the door! Its so difficult & Im so stressed about it. I get dla which definately helps its just awful you have been refused PIP. Keep fighting for it. Disgraceful we have to fight so hard to prove how this disease effects every aspect of our daily life! Everything is so uncertain with benefits too can you claim ESA? I am going to try for that. I hope you make the right decision for you but sometimes that decision is already made for us when we are just not physically fit to continue in work 🙁 and that can be v sad too. X

Polly2Cats profile image
Polly2Cats

I'm in a similar situation too. shann07 suggestion re benefits etc is good and something I will look into myself

I was off 5 months last year and have only worked 3 days this year! I do a full time job which is very demanding with lots of driving.

I had completely given up hope of getting back to work but I gradually started to get better. I don't know whether it was drugs or just me managing symptoms but I'm trying to start back at work part time with a view to getting back full time. Occupational health says there's a high risk of this failing but I want to give it one last try otherwise I'll always have "what ifs" and "maybes". It may just be putting off the inevitable but I want to try for my own self esteem and sanity - I don't want to feel like I've given up without a damn good fight (not suggesting that's what you are doing!)

The other aspect I'm struggling with is the impact working will have on my limited ability to enjoy normal life with my partner ... It feels like I have to choose one or the other as I've only got a limited energy resource

Whatever decision you make ... You can change your mind in the future. You are young and things change so even if you choose not to work at the moment it doesn't stop you working in the future if you are up to it. I used the word "choose" on purpose, I find that making active decisions and choices myself helps me feel a little more in control instead of at the mercy of an illness - I've decided not the symptoms

Good luck

Silvergilt profile image
Silvergilt

I feel you. I've had to give up several self-employment opportunities and doing part time admin now, but I'm really struggling and, when I move in with boyfriend I'm going to give it up. It's frustrating, but I haven't 'failed', and neither have you. There is no 'failure' here. Survival is its own victory, and I know that goes against the pushed narrative of worth being measured by bank balance and employment status, but worth cannot be measured by bank balance.

However, of course there's the issue of being able to have some form of income, and the PIP is notoriously difficult to apply for. If you're really struggling, it's concerning that you keep getting turned down :( Is your specialist very supportive? Have you joined the Benefits and Work site to get information on how to apply for PIP and how to appeal? it's very helpful. Tbh, I considered not even bothering to apply for PIP next year as I figured I wouldn't get it, but I've got nothing to lose and I will give it a go.

Wendy39 profile image
Wendy39

Hello. I feel for you. I haven't applied for PIP etc so cannot offer any advice in that respect but I do understand how you feel about giving up work. I'm 41 years old. Mum of 3 children. I was diagnosed in 2013, aged 39. I left my job as a personal injury lawyer, about 6 years ago, as I wasn't coping with working and having 3 young children. I was having my first big flare of lupus but I didn't know that then. And it wasn't diagnosed for years after. I was being bullied a bit at work too. So was spending a lot of time in the toilets crying and couldn't understand what was happening to me. I was always a strong, independent woman and I loved my job, it's what I had always wanted to do. So I had a career break and looked after the children. But I felt like a failure for a long time. I gave up my dream job after all. I then re-trained as a Classroom Assistant, as after volunteering at the school I really enjoyed it, plus it fitted in with my children and school hours, so no child care needed. More importantly it wasn't too stressful and I could get through with my lupus brain fog. I worked 2 and 1/2 days a week - 2 full days, 8.50am-3.10pm and 1 half day, 8.50am-12.15. However I finished this last week. Worked my notice and I'm done. My flares are getting closer together. The fatigue is overwhelming and I was napping after work every day - leaving my children to their own devices at home, as I couldn't keep my eyes open. It got ridiculous. And my husband wasn't seeing much of me, as I was in bed after eating every night. The hydroxy wasn't cutting it any more. So I am again taking time out, to get my health sorted out. I had a 5 week course of steroids which made a huge difference to me, no symptoms and no fatigue, I spent time with my family, but my Consultant says I can't stay on them any longer. (was on 20mg for a 2 weeks and then tapered off for 3 weeks). So now started on 1g of Mycophenolate Mofetil a day. I am hoping this will have a positive effect. Although I think I am still feeling the benefit of the steroids, to be honest. Haven't had so much energy for years! Anyway, someone said to me last week, get your health sorted and you never know, you might be able to go back to your legal career. I held in a massive guffaw and said, I don't think I will ever be able to do that. People just don't get it do they! I am lucky that my husband has a good job and is very understanding of my illness, so really encouraged me to give up work. I love cooking and baking and am looking forward to some time at home to do some jobs that I have been putting off for a long time - like clearing out the attic etc. Plus I will hopefully be able to time naps during the day, so that I am awake when my children get in from school. I really hope you get your PIP sorted out and can finish work. This illness is enough to deal with. Don't feel like you've failed. Keep us posted on how you're getting on. Best wishes with it all. Wendy

Maureenpearl profile image
Maureenpearl

Hi Leanne

When you appeal your PIP make sure you take someone with you like the Welfare Right's officer. Your local council should have the phone number for you to get in touch.

Before giving in your notice why not go off sick and then you will be put on ESA from the local Job Centre Plus.

Praying all will work out for you. God bless xx

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