Coming Around Again

Before I went to Woolfest, I received form IB50 from the Benefits Agency. The usual claptrap about wanting “more information” about my medical condition – the same form that I received 18 months ago which led to the Great IB Debacle. O Joy.
It didn’t have to be returned until the 12th of July, so I decided (sensibly) to leave it until I returned. Frankly, I had more important things to think about – like my recovery and getting to Woolfest. The form has since been filled in and was posted in time, but it raises some interesting questions.
18 months ago, despite being virtually housebound by agoraphobia and panic disorder, my IB claim was turned down. The doctor who performed my Personal Capability Assessment (PCA) massaged my answers to fit his criteria, and in the end it looked as though there was nothing wrong with me. This time, I am a million times better than I was, yet still not well enough to get to the Job Centre to sign on by myself. I need more time to continue with my CBT, to build up my levels of independence to a point where I can rejoin the real world properly.
You see my quandary. Not well enough to sign on, but technically not unwell enough to claim IB. I am in limbo, and my choices are limited. If I tell the truth – that I can get out and about to limited places like the local shop, I’ll fail and be denied IB. Alternatively, I could make out that I’m no better, and even though I’ve made progress with CBT, I could say I still don’t go anywhere on my own. In other words, I could lie.
I’ve decided to write a blog entry about it to highlight just how screwed the system is. Instead of focusing on my recovery and being positive, I’m put in a situation where I’m worrying about whether my benefit will be stopped, and focusing on the negative to make sure that doesn’t happen. In other words, going against everything that the CBT has taught me. Anyone who has filled in these disability benefits forms knows how soul destroying it can be. Telling the Benefits Agency all the negative stuff. It compounds it, drives home how much you can’t do. Everyone who knows me knows that I’m trying my damnedest to get past the agoraphobia. They know how much I hate it, how much I’m fighting it. How much I’m trying my damndest to stay positive. However, I still have problems. Going most places leaves me mentally exhausted. I have to push myself every step of the way. I still can’t answer the telephone if I don’t know the number, and I still don’t answer the door. I do try to keep a positive mindset, and part of the CBT focused on how negative I can be, and helped me address that. Now I’m being made to fly in the face of my therapy to get a bit of money to live on.
I have kept my paperwork from the IB Debacle, and my one comfort is that I know exactly what they’ll be looking for. However, it still makes me uncomfortable, in spite of me saying 18 months ago “I don’t care if I have to lie, I don’t want to ever go through an appeal ever again”

8 thoughts on “Coming Around Again

  1. Mary says:

    Just look at your answers from last time and think “is that untrue?” If it’s true, copy it over, if it’s untrue, think abou thow to change it.
    Also, remember that having done something once, on a good day, with plenty of preparation, no nasty surprises, and some time and space to fall apart afterwards, doesn’t mean that for the purposes of the form, you can do it. A good rule is “can I do this on demand? can I do this most days?”
    Non-disability example: Pip is potty-training Littlun. Littlun has, on a couple of occasions, managed to successfully spontaneously ask to go pee and done it in the potty. Yay! Hugs! Treats! Much celebration! But if the nursery ask “is he potty-trained?” then despite the current score of accomplishments, the general overall answer will be “no” for quite some time yet.

  2. Aff says:

    Hi DC,
    I’ve been there. I lost IB a few years ago now and haven’t bothered to reapply because they made me feel like I didn’t deserve it.
    I still can’t get to the Job Centre on my own and recently I’ve been told that the mental health trust can do no more for me. Which, for days, left me down and the only – the *only* way – I’ve been able to keep myself sane is to simply not think about it. I’ve gone out every day – doing whatever I can with whoever I can – just so as to not spend time at home thinking about it.
    I think people who know what the system is like and those who have suffered like you have know very well what it’s like. And I hope that’s enough to still feel positive about everything you’ve done and everything you continue to do.
    Chin up 🙂

  3. Claire says:

    You shouldn’t have to be worrying about this at this time. As you say, you’re getting there, and it stinks that you have to focus on the negative – maybe think of the thing as having to be written in a code – so, as you say, it’s not actually how you are that determines this, it’s the words you use. Unfortunately Plain English isn’t what’s required here. Sending you some hugs, and hoping your Doctor understands this time.

  4. kath says:

    I know what you mean about being between a rock and a hard place. There’s no inbetween for people in recovery. It’s a difficult one, but I must admit I couldn’t lie, my anxiety levels would go through the roof!!

  5. D says:

    I could physically go and sign on (but mentally noooo) but I’m not at all ready to work. I claim income support (I have no idea why it isn’t IB) I’ve had two medicals (PCAs), last time the doctor basically asked me if I was the same as last time and that was me on IS again until the next one!

  6. Robert says:

    I totally empathise with your problems about IB. Remember, when you are filling out the form, that you should describe your condition as it is on the WORST day – not an average day. This info came from the CAB.
    My wife’s experience with the doctor who performed the PCA was the opposite to yours. He tried to “suggest” answers beneficial to Marie’s claim. But she refused to lie, and lost her claim.
    She is, however, getting the mobility allowance from DLA, since she can’t use public transport. Have you looked at getting this?
    You are right – the benefit system is geared to make you feel worse – or, at least, encouraging you not to get any better. People with mental health issues get a raw deal.
    Keep thinking positive & b***er the BA!

  7. Kath says:

    Sorry to hear your problems – definately fill the form in as your WORST day – Mum was given the same advice. Sorry I’m so long in commenting on your blog – I kept losing your address in my favs. On a brighter note – have just listened to BritKnitCast while looking through your WoolFest photos and heard us and saw my in your Fyberspate photo – so strange but great to be reminded of such a great weekend. Hope you’re not getting too down about stupid forms etc – just have a cuddle of all your lovely fibery goodies and keep your chin up!! Take Care!

  8. Chris says:

    Where are you??
    Hope everything and you and Him are ok.
    Love, Chris

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