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LUPUS UK
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Want to volunteer but worried about being unreliable

I was a busy person, worked, raised a family, volunteered. Now I'm stuck at home wishing I could get out more. Recently a local organisation advertised for volunteers and I'm tempted but still have the 'unreliable' nagging doubt in my head. Do any of you out there feel the same?

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100% yes Sue, went from a terrific job and being pensioned off at age 38, to nothing. It was the right decision, the pressure of my job was making me worse. I did go into voluntary work, but very soon found myself having to let them down, and that is when the guilt tripping hit me hard, and realised that I simply cannot commit to anything, which both upset/frustrated me in equal measure.

Fast forward to now, I have accepted my position, know my limits, which simply cannot involve commitment of 100%.

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hello ,just to say i know exactly how you feel . have not worked now for 4 years due to constant ill health and the loneliness is the worst as all family are out all day and most friends disappear as to be honest lupus hides itself well , we may look ok but nearly everyday brings a different problem. i also considered volunteering but knew i would be unreliable . i was desperately looking for a support group so i could meet with people who understand but unfortunately there doesn't seem to be one where i am but maybe you may have one in your area . good luck with whatever you choose xxx

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Yeah I feel the same would love to be able to work again I was asked to leave my job five years ago because of my health . I think sometimes should I try a bit of work but then I feel really unwell , no energy at all and I know I would not be able to hold a job down . I hate being on benefits and the way they treat you at assessments for esa etc you are treated like scum just because you are sick , do they really think you would put yourself through that experience if you didn't have to , I would love to be able to ring them up and tell them to stuff their benefits where the sun don't shine but unfortunately I live alone , I don't have a husband bringing money in and so I have no choice but to go through it . I am on immunosuppressants and worry about catching infections in the work place I got a few pretty bad ones when I was working including meningitis which nearly killed me . When I worked I would come home with joints swollen and exhausted and i was forever taking extra steroids to get me through and that was just working part time . People probably do look at me and think I wonder why she does not work , the joys of the invisible lupus , no-one understands they think fatigue is just feeling a bit tired , of course we all know it's far more than that , they don't realise we have to take loads of potent drugs to keep us looking half way normal , drugs with horrible side effects just to add to the illness , we would all love to be well enough to work and have a social life but unfortunately the invisible monster makes it impossible . Sorry for going on a bit x

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You've nailed it really, autoimmune problems are invisible, I've got Sjogrens and MD but when I'm out will put on make up and look reasonable for my own self respect, but am sure neighbours think with me not working I must be lazy or something. They don't have a clue what it's like to constantly battle fatigue. I would like to do a bit if voluntary work but know I would soon get so fatigued and ill just couldn't keep it up and feel awful letting them down so I can't even consider it. Trouble with that is they expect a good few hours if it were one or two fine but not a whole morning or afternoon. In the end you just have to accept your limitations and stop beating yourself up. Same if you are on benefits plenty are and have less reason to be than you with ill health, hold your head high and fight fight with fire if they get funny with you.

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That's the problem there are still fraudsters claiming these benefits and they treat everyone like a fraudster even when you supply them with pages and pages of evidence , at my last ESA assessment 2 hours ago they gave me zero points and stopped my ESA and I had to sign on until they changed their decision when I applealed it , I've got lupus arthritis , lupus nephritis , osteoporosis , on warfarin because my blood clots and am completely dead in my right ear following surgery for an acoustic neuroma . They just lie in the reports to get people off benefits , they said I had lied about my deafness because I wasn't wearing a hearing aid , there's nothing a hearing aid can do if your hearing connection to the brain has been cut during surgery and I had to have further surgery to remove my eardrum all together because of leaks of CSF fluid so where did they think I should put a hearing aid , they made no mention of my kidney disease and didn't mention that I am on immunosuppressants which I think they did deliberately because they know that if you are on immunosuppressant medicine that proves you have a serious condition , that's what you have to deal with , my next assessment is due again soon so not looking forward to it at all . I do think should I try and find work just so I don't have to go through all that again , which is of course what they want you to think , they hope you will give up because of the stress , but where do you stand if you try working and it doesn't work out , you can't reapply for ESA for 6 months you end up with nothing to live on . I probably wouldn't be able to get a job anyway at 58 with several health problems , the system is a complete joke you are made to feel like a criminal because you are unfortunate enough to be seriously ill . I will fight it if they do the same to me at the next assessment they shouldn't be allowed to do this to people who are genuinely sick and have proved it .

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I know sorry to hear you are having such a rough time but not surprised the government set up these agencies to ensure everyone is found to be well and in no need of help. Disgraceful, a friends son was hearing voices, though he could change the weather had clear mental health issues but got no help after a doctor was sent round and said he can eat so he's fine! If they can find billions to give in foreign aid surely they should be putting their own people first but they won't. You should not feel like a criminal because you are ill and need help. Have you got an mp who could help? My friends mp was very good and he eventually got some money. In your case you have to stand firm and as someone once told me make a nuisance of yourself if you have to, fight fire with fire. Good luck.

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That's terrible , the government were recently made to change the way they look at mental health cases thankfully , I am glad your friends son got justice , a friend of mine said an elderly neighbour of hers who is physically disabled and special needs got refused pip after being on disability living allowance for over 40 years he even got refused at an appeal , had to go to the higher appeal court and won , it's criminal that people are put through this , it's degrading . I am not going through it at the moment that story was 2 years ago I mistakenly said 2 hours in my post . I got the esa reinstated before the appeal , the appeal courts give the dwp 4 weeks to explain why they have stopped the benefit and they changed their decision right at the end of the 4 weeks so it didn't get to court , I was given the esa for two years and that 2 years is almost up and so I will have the whole thing again and no doubt they will stop the esa again even though I still have the same conditions and I am on the same medication . They must waste so much money with all the appeals as so many are won . I would love to know how many billions they have spent changing disability living allowance to pip something that is completely unnecessary , another one of David Cameron's ideas aswell as the Brexit vote , no wonder he resigned , unfortunately the damage to disabled people has already been done as for Brexit I don't think it will ever happen .

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I know its disgusting what they've done to disabled people and all on the tory watch don't know how they can sleep at night, would never have thought they could be so bad, agree punishing the people for Brexit I think. I have a friend who walks on sticks and has to go to work in a call centre because her pension has been pushed back twice now, those over 60 find it hard to get jobs, she has to sit for hours in pain. All you can do when they assess you again is be as determined as they are and one way or another make sure you get your money.

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Just noticed the mistake in my last reply , my last assessment was 2 years ago not two hours ago , ha ha .

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I think it would be a wonderful idea to start doing some volunteering. I'm in a bit of a similar situation. A few years ago I was a teenager going to multiple youth groups, doing my DofE, etc. Since then I've had to drop out of uni (twice), bail out of DofE at the last minuet and I'm now unemployed and spend almost all my time at home.

The hour of volunteering I do each week really helps keep me sane. I also do a bit of volunteering from home which is super flexible. Helps me feel like I actually exist as a person (and keep some sort of concept of what day it is).

Just find something that's not too demanding and where it won't be the end of the world if you can't come in some time. As long as you're somewhat open about the fact your health can be a bit unpredictable they can work around that and should just be happy to have your help when you're available.

If that place is asking for volunteers they'd probably be all too happy to have your help even if it was a bit unpredictable. :)

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I have volunteered for just the same reasons as yours. If you do it, you need to be careful not to push yourself to meet the commitment when you are borderline not up to it. I loved feeling useful but ultimately having a commitment was stressful for me, and trying to meet it wore on me over time. Many of us need to just take each day as it comes.

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Go for it. Best wishes Kevin

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Hello,

I have Lupus SLE and I am so far one of the lucky ones, who is still able to work though it, Though it does have an impact on me , when I have a really bad flare up.

As a job I happen to work in the charity sector and can assure you that most , but in particular the smaller , local charities would welcome and value new volunteers. They should all be able to listen to your situation and offer you opportunities that suit you. Perhaps you can offer your resources by calling in when you are well and seeing if they have any work for you that day?

Or if you want to help from home you can offer to do things from home like research or perhaps writing articles for them or updating their records, or designing posters for events if you have those skills?

I think that giving ourselves a boost by helping others we all gain in one way or another. Your not being paid so charities should be grateful for your offer of help Evan at ad-hoc times. Sometimes even just following their stories and making positive comments on their work and sharing it via social media , can help them spread awareness.

If that idea does not float your boat you can always look for more of a personal social organisation like the U3A, the University of Third Age, they are a group or retired or semi retired people who meet up to do like minded activities that you wish to take part in. If you are not in that age category I apologise, but it's just an idea there maybe other organisation you look into, such as the W.I. they have women of all ages and meet during the day and evenings depending on which group you join.

Meeting people even at a coffee club will help.

I sound positive, but know it is not easy, I have just come out of a 3 week bad spell , but I want to carry on doing as much as I can so my mind does not crash along with my body!

Hope this helps and gives you some ideas and encourages you to do something to lift your spirits.

Take Care xx

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It’s something you want to do so I think you should go for it! If it was me, I’d find something that’s flexible, non-commital, an hour here or there... you can share your history (medical) but it’s not something you have to share.

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