my PIP journey

I am disabled, I claim benefits, I live on money given to me by the state. 

Words that make me feel awkward to say out loud. I don't know why

I have recently been through the process of having my 'needs' reassessed by the state. I want to share this process with you because its impact surprised me. 

I initially applied for help in 2007 when I was forced to leave my paid scholarship as a PhD student. This was an easy process which involved getting a paper application approved.

Earlier this year I was forced to admit that as a result of my worsening neurological issues and a recent diagnosis of Addison's disease, which is proving incredibly difficult to control, I am in need of far more care, support and consequently disability allowance/benefits.

When I rang up to request my case was reassessed I got predictable but unwelcome news that this would mean being assessed for personal income payments (PIP).   

The paper application was not dissimilar to disability living allowance (DLA) and evidence was not hard to collate given my abundance of hospital letters. My first major stumbling block... an assessment. I had never had a face-to-face assessment while on DLA and to be quite honest with increasing problems with anxiety, the whole process terrified me.

I managed to request and arrange for a home visit which made me feel a lot better knowing I would be in my own environment. Despite this the stress affected my Addisons which meant I had to 'stress dose' with my life saving steroids. 

The nurse was nice enough, but it was obvious from her questions that despite having 'researched' my conditions she had no idea what I was talking about ... But does anyone!? 

I must admit somewhat naïvely I didn't think that this process would negatively change the level of allowance that I was receiving as I was confident that it was wholly in line with my needs. I was just hoping and hoping that we would be able to increase my allowance giving us far more freedom and ability to cope with the day-to-day issues that are increasingly apparent. 

The day my letter arrived I sobbed for hours. My award had been slashed in half, in the coming days other areas of our income were reduced in line with the fact that I was not as disabled as I was last week! We had no idea how we were going to live on this reduced income. We would probably manage on a practically invisible budget but wouldn't be able to get to any of my medical appointments which are a 250mile round trip. 

After the dust settled and I calmed down, which took a while, I realised we had only one option, to fight. 

Fight... Again? Another one? I can't! 

I got advice, support and evidence and asked to see their full report to see what I was dealing with. 

I know my health is complicated, it's unique and special just like me (stop laughing!) but TRY! Try to understand that a TAC attack is not a seizure, and my seizures are not headaches! 

And apply some common sense! If I can't take hot food from an oven an alternative is not 'use a microwave'! 

The report gave me hope, due to its inaccuracies, but I still didn't want to...couldn't fight. I'm already fighting 9 health conditions, the medical system, fighting for understanding and fighting to get out of bed each day and make it through that day without hurting myself! 

Now this, another fight that makes me feel like I'm faking my illness, makes me feel guilty as it affects my family too. It's more paperwork, more phone calls and more days filled with anxiety. 

I ended up in a 6 month dialogue with DWP which resulted in a tribunal last week. 

The process destroyed my mental health. It was fragile to begin with but less than a year after my last counselling block ended I have now been referred to a psychiatrist. I can't cope with the anxiety and the suicidal thoughts. 

I touched on it before; I felt like everybody thought I was faking how ill I am. Family, friends, others with my conditions, the DWP, doctors. Anyone I told I 'heard' them say 'I knew she was exaggerating'.

I second guessed everything I did. On the rare opportunity I got to socialise or even on essential shopping trips I was scared to go, worried that it would reinforce what I 'knew' people were thinking. 

Last week I was awarded the level of benefits I was hoping for in court. Yes court. Being searched and having drinks and sharp objects removed (a plastic comb!!!) and having to wait outside the court room. The nerves got the best of my and after sobbing and asking for my mum (yes I'm 35! Yes I need my mum!) I arrived in court tear stained and shaking.  Not to mention it isn't good to leave someone with addisons without hydration! 

The panel were lovely by the way but I don't feel I should have ever found myself in their presence! 

Yes I'm happy and I was elated when I rang my parents. But it's not sunk in, I'm convinced it's going to go wrong still. I'm still anxiety filled and  already thinking about a reassessment in 2019! 

I was so far down the dark hole that it's hard to see the light... I can see the stars though, they shine bright no matter how far I fall. Life can get better based on this decision but it will take time, because this process was a huge setback. I need to learn how not to be scared again. 

Now this is just my experience, and in my experience of friends, family and social media this process varies from person to person, from city to city and condition to condition. WHICH IS UNFAIR AND WRONG

Don't be afraid to start the process... Be aware that it CAN BE a scary, traumatic, long and complicated process filled with unknowns... But it's worth it if you are able to afford the things that your health makes problematic/impossible. 

I claim benefits, I'm not a fraud, I am very disabled but I also have abilities and ways of improving my life and others lives. After my 1st assessor said I couldn't possibly have problems communicating face to face as I blog (yes I know, it confused me too! ) I stopped blogging. But I'm back, blogging and vlogging to make sure no one ever feels alone on this journey.