Dealing with the PIP Assessment

I hadn’t planned on writing about my experience with the government’s new Personal Independence Payment (PIP) for disabled people until I’d received news on the outcome of my claim. PIP is the controversial replacement for Disability Living Allowance (DLA) and it’s the first time I’ve ever attempted to claim any disability benefit beyond Access to Work, which provides financial support to disabled people who would not be able to get to their place of work without, for example, a taxi.

Parts of the PIP process have been mind-numbingly disorganised while, ironically, the step I was most worried about ran incredibly smoothly. I’ll return to the process as a whole once it’s complete. But the purpose of this post is to discuss the unexpected and unwelcome development that has coloured the past couple of days. And before I go on, everything I say here has been my experience. If you’re about to go through this process, it may be completely different for you. But I want to share my experience so that you’re prepared for something that may happen afterward.

I was incredibly nervous about the medical assessment I had been called to. I spoke with friends about it, gathered advice on what might happen during it, watched the DVD the clinic had provided and tried to put myself in the frame of mind that this was my opportunity to tell my story, not theirs to interrogate me. Still, I was scared.

To my surprise, everyone was incredibly friendly. The two reception staff were lovely and my assessor came out to say hello before we started. This also gave me an opportunity to remind her that I had requested a particular kind of chair for the duration of the interview. She and I were joined by a third person, a manager evaluating my interviewer. She remained silent throughout the majority of the interview.

The interview itself was never unkind or confrontational, and I was told regularly that I could stop for a break if I got too tired. I felt that they were really listening to everything I was saying. It was definitely thorough. I was asked a large number of questions on how my health condition manifests itself and how it impacts upon my life. I was also asked to go into great detail on how I spend my day; right from when I wake up to going back to bed. Suspecting this might be the case I produced a lengthy document listing every symptom, external aggressor and impact I could think of. This turned out to be so useful that both she and I worked from it. She also suggested I present it to the DWP as additional evidence.

The interview ended with a short physical examination. This simply meant standing in front of the assessor and mimicking her movements. As my condition affects my balance she was looking for how steady I was in carrying out different positions. This was all done very safely and she actually skipped one because she could see it might make me quite dizzy.

I left the meeting extremely tired but feeling good that I’d got through it by myself and that it hadn’t felt like I’d been cross-examined in court. I bought a drink from the nearby coffee shop, called a cab, reported to the world that it had gone well, went home and expected to spend  the afternoon resting. I wasn’t prepared at all for what came next.

I crashed. The interview, for me, had been a double-edged sword. I desperately wanted them to understand how significantly my condition affects my life. But to be able to do that you have to paint a painfully honest picture of what you can’t physically manage.  You have to let them know in no uncertain terms that on your worst day your life is truly horrible. The uncomfortable feeling manifested itself slightly when I was drawing up the list. “These are all the worst things about my life in bullet point form and I don’t want to look at them.” I thought.

A few hours after the interview I felt like all that negativity was like a disgusting stench I couldn’t wash off. I had spent the last six months spending every day teaching myself not be bogged down in all the things I can’t do and to feel grateful for what I can. My counselling had taught me strategies that pushed away the bad stuff and concentrated on the good. In that one hour of questioning I had to abandon them and strongly protest that yes, my life is terrible.  For want of a more poetic way of saying it, that contradiction completely screwed up my head.

For some 24 hours or so I felt like I was free-falling. I cried big, sobby, snotty tears that I didn’t know how to stop. I went for a walk and nearly burst into tears at a shop counter. I pestered my friends for solutions. Eventually I collapsed in my dad’s arms and cried harder than I’ve cried in a long time. Today, my eyes hurt like I’ve just spritzed them with lemon juice and I’m still feeling a little delicate, but it’s time to get back on the horse.

Everyone manages their condition differently. Some may find the interview more upsetting than I did. Others, like me, might crash afterward. You may not find any part of the process distressing at all. If you do sink, though, here are the three things that helped me to start making sense of the experience and may help if it happens to you:

  • It’s important to remember that just because you’ve had to talk about the very worst days, it doesn’t mean that every day is that way. To get back on track, you have to put focus back on the achievements and the good days. It’s a very difficult mental shift, but that’s why it’s so important to record the good days, so that you can refer back to them on your worst.
  • However painful, sometimes collating and reviewing all the challenges you face on a daily basis can be important. When you’re living with a chronic health condition, especially an invisible one, it can be easy for you and the people around you to become blasé about how well you cope.  Coping becomes the norm. For all that staying positive is crucial, a reminder of how much you quietly deal with can be powerful, both to yourself and to your friends and family.
  • Sometimes you really do have to cry it out. It can be scary and one of my deepest fears when I sink is that I’ll stay there. But if I’ve learnt anything over the past few months it’s that if you keep pushing emotion down so that it can’t escape, it will find its own way out at the most inconvenient time. I’m incredibly lucky to have such wonderful friends and family, who look after me so well.

If anyone would like to talk to me about anything in this post please get in touch via email, Twitter or Facebook. I am happy to go into more detail about the application process, the interview or what happened afterward if you’re in the same situation and need some support. I’m also willing to show my ‘supporting document’ to anyone who would like to copy what seemed to be quite a successful format.

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4 Comments on “Dealing with the PIP Assessment

  1. Thank you for posting this. I’ve also just crashed, emotionally. I cope well and have such a positive attitude – then this week the sum of the past few years just hit me. Your point about becoming blase about how well you cope hit home. I’ve had people say I’m the best person to deal with this, which is frustrating in itself. I get through it, but it is so hard. It’s only know I’ve stopped and taken a break I’ve realised just how hard.

    Hope you’ll be back on your feet soon too x

    • Yes. It’s a completely different pool of money and it didn’t take long to arrange. If you want to email me at the email address in the Get in Touch section, I’ll see if I still have some contact info for you and explain the process.

      The blasé thing came from my dad. I think when you become quite good at coping people don’t see how bad things are. Sometimes they (and we) only see it when we crash.

      I have just read what you posted on your blog today and I think we should have a chat, so fill me in via email what you’re dealing with and we’ll compare notes. What you’ve written today has struck many chords with me. Especially from when I was working in my old job. Calling in sick was awful.

  2. I have just come across your blogs after being diagnosed with bilateral vestibular failure. It was so useful to read and can understand all the emotions detailed. I am still coming to terms with the diagnosis but am finding life particularly hard right now.

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