Ready to give up

I had lupus since I was 19 so 20 yrs now and all I seem to do is fright with no GD out come and now having to appeal to the upper tribual. It took me 4 yrs to have a baby after misscage one after anothe.Trying to keep a job as long as possible as I wanted a as normal life aspossible.Now being called a lier and that I have faked everything feeling there is no point in carry on.

11 Replies

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  • Hi there, you have had some really tough times and are probably ground down and worn out, please draw friends who you trust close to you, and go and see your GP or at least think of ringing a help line, you need some support, not being believed is often what happens to those with invisible illnesses, and at time some gentle education can help in terms of education and leaflets. Please don't stay on your own feeling like this! MaryF x

  • Hi kimberlygib, who is calling you a liar? Is it your work, or because of the tribunal. Either way you need help to battle these feelings. Think logically about it all. You have a diagnosis, so no need to prove yourself. You have a much wanted child who doesn't care what others think, and finally a panel of people who think they know you. Is your upper tribunal to do with work or is it pip? As well as the daily grind of living with lupus, we have the sometimes harder task of getting recognition for our suffering. This is not written in the leaflets, we have to find that out for ourselves. Despite our posts on this site, sounding as if we have life sorted, we really haven't. The truth is for me anyway, that I have no other contact about my problems with lupus. Don't give up, you have coped 19 years with this, ask for help wherever you can. Of course don't forget us at lupus uk ( HUL) either. Please take care.

  • It was the judge at theat the at the lower appeal and so call friends.The judge said as long as my husband get me up and puts me on the sofa I be alright there all day and told me to drink less so I wouldn't have to go to the toilet much

  • Please don't be influenced by the Judge's comments, remember they have an agenda and their role is to consider if someone is entitled to benefits. It clearly shows a lack of insight and knowledge into the condition. As for your friends, mine often don't understand how lupus affects me - the common phrase is 'you look well', or even 'you look really well'.

    Feeling a fraud sadly often comes with the many other thoughts and feelings we try to deal with when suffering with this illness. At the end of the day, you are unwell, you know you are unwell and it is a sad state that we have to 'prove' to people that we are ill. The diagnosis itself is confirmation of the illness, never mind the many medications you are likely to take daily so don't doubt yourself, you do have a chronic illness that affects your daily life, maybe give your friends some SLE leaflets, and don't give up the fight with the DWP for benefits you are entitled to.

    Take care.

  • Hi, Kimberlygib, I just want to echo what the others have said: don't let one insensitive, ill-educated judge get to you. You have the diagnosis, which is the first step - and that *never* comes easy! - and you've coped with it for 19 years. I agree that you should seek help - if you trust your GP, go there, and if not, ask to be referred for counselling - and I would definitely seek the help of CAB when it comes to your next hearing. (If I had been told that, I would have printed off everything I could find about lupus and sent it to that judge with a note saying something like, 'Lupus is not that common a disease so I am to surprised you ave not come across it before. I thought you might find this helpful.' I'd sent it care of the tribunal. No threats, no railing, just the facts. It might not help me right now but I would hope it might help the next person.) It does make me so cross: we have so much to deal with already, and then some uneducated idiot in a position of power treats us like that? GRRRR! So channel that anger into helping yourself. My friends often don't understand either . . . So I showed them a few of the open posts. My gosh, but that helped! So now when I say, 'I'd love to but I can't' they say 'can we help?' Rather than 'for heaven's sake pull yourself together!' Good luck - and let us know how the appeal goes!

  • I will let u all know thank u all for all your kind words xx

  • Hi kimberleygib,

    I'm really sorry to hear that you are so low. Have you spoken with any of your doctors about your low mood? If you haven't, please see them urgently as they can help you. If you don't feel able to talk to your GP and feel you are at risk, please go to emergency services.

    Sometimes just talking to somebody can be helpful, so perhaps call Samaritans if you need somebody to listen. Their number is 08457 90 90 90. You could also call us here in the office Mon-Fri 9am-5pm on 01708 731251.

    Are you currently getting any help with your appeal for benefits?

    It sounds like you are currently in a very stressful situation, but there is certainly reason to carry on. Things will improve.

    If there's anything I can do to help, please let me know.

  • Thank you Paul I have seen my gp and at the moment just don't know what to do with my appeal to be honest don't know where to turn x

  • Hi Kimberly, are none of the options above a possible help to you? If you have a good GP, they could have arranged for an assessment from occupational health team, by which a report could be made for your tribunal. My GP surgery also have a person who will help you with all your form filling, and other advice to better your case.(sorry can't remember their title). The CAB, are another good suggestion, as said above. These people who have the right to tell us how we live, have their job made easier by people like yourself. I'm not trying to upset you further, I am hoping to kick your fighting spirit into action. You need to find the strength that you have maintained for 19 years. Don't fall at the last hurdle. A lot of enquiries can be made over the telephone, so do what you can from home. You need to present the best case possible. As for your friends that call you a liar, they are not friends. You need positive people around you, who can maybe help. Please look at some of these options, after all you have nothing to lose. X

  • Thank u all x

  • Hi Kimberleygib, Sorry to hear about your plight. I went through an appeal as has many of us who use this site. It was hell for a year. I did get some help form a local organisation a bit like the CAB. They were also prepared to accompany me to the tribunal. It is very important you get some help with the tribunal. I can imagine that you are worn out form the first one, so having someone else in your corner to share some of that burden will help alleviate some of the overwhelming stress. Also do not assume that they know anything about lupus at the tribunal. Often the tell you that the tribunal panel does include a doctor and you would assume that this would be helpful for your case,but that is not usually the case. Most general doctors still know very little about lupus. I submitted a lot of information on lupus to the tribunal weeks before I was due to attend. I sent information particularly on the symptoms most affecting me and letters from my consultant. In the end the DWP decision was over turned and I was placed in the support group.

    Please don't give up, I know it all seems insurmountable, especially when you feel wretched from this illness every day and you would rather crawl into bed and never get up. But take heart, it will get better and we are all here rooting for you.

    Take care

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