In early April last year, my life turned upside down. I had been living with PoTS for 6 years at that point. I was coping, but barely. I had several bouts off sick from work; I tried various days and hours in the hope it would alleviate my symptoms, but whatever I did, I had to face the fact: My PoTS was getting worse.

In April, I was signed off work indefinitely and applied for PIP (Disability). I was struggling, but due to not working and receiving no financial help, money was tight. I needed a wheelchair, a kitchen stool, a shower seat; all things impossible to afford when you're receiving no income and paying out well over £1000 a month on rent and utility bills.

When I applied for PIP, I assumed it would be sorted in a month or two - I'd have the money to buy the things I needed to ensure I could live my life to the fullest, and things would be great - right? Wrong.

I waited 3 months for my assessment in July (which was one of the most awful experiences of my life), only to be told 6 weeks after that they'd made the decision - and the answer was no. I wasn't eligible for any help. After battling my condition without any living aids for 6 years and finally asking for help, only to be told no, was so disheartening and I almost gave up.

My family pushed me to appeal; they knew I deserved it. I asked for a mandatory reconsideration. Again, 2 months later, I was told no. In December 2017, I applied for a tribunal (my case to put in front of judges and healthcare professionals), where I was told I could be waiting 16-20 weeks for a date.

I put it to the back of my mind, as I have really important testing for my PoTS in 2 and a half weeks. So when a letter fell through my letterbox today, I assumed it would just be a letter informing when my tribunal date was. I was wrong.

I opened the letter and sobbed. And sobbed. And sobbed. "You are entitled to the daily living rate". The words I had been dreaming of reading since April last year were right in front of me. They were real. It was really happening. I read the letter over and over, thanking the 3 judges in my head repeatedly.

The thing with waiting so long and being told "no" repeatedly is, you start to doubt yourself. You doubt that you're worthy of it, that you deserve it, that you need it. Your mental health spirals into oblivion because you start to feel like you're a fraud. You can rifle through hundreds of pages of paperwork from consultants, cardiologists, GPs, healthcare professionals, but the little voice in your head reminds you daily, "the PIP board said no".

As I'm typing this now, it still doesn't feel real. 10 months of battling to "prove" to people that I'm ill enough to receive help has been draining and demoralising...but worth it. I'm due for another assessment in April 2020, and my pay will be backdated from April 2017 so I can finally buy the equipment I need to have a life again.

For anyone out there who's wondering whether to apply, in the middle of a case, awaiting a tribunal - keep fighting. I almost gave up so many times over the past year but you deserve that help; you deserve that money. It's hard - my god, it's possibly the hardest thing I've ever had to do but don't give up. Keep going, keep pushing. There's a light at the end of that tunnel; even if you can't see it yet. I'm finally seeing mine today.

If anyone has any questions, or wants me to do a video on what the assessments are like etc, please let me know. I wish there had been more information around when I applied, as it's definitely a long, scary process.


  1. This is fantastic news! You absolute deserve it <3
    I'd love a video if you're up to it, I am dreading even applying.
    Cora | http://www.teapartyprincess.co.uk/

  2. This is brilliant news! I'm so glad you're finally getting what you need! X

  3. Amazing news!! You're very lucky. Do you mean that the tribunal decided that you should get PIP without having to attend the tribunal?? I applied last April too and my tribunal was meant to be two weeks ago but three days before I got a letter telling me that they had to postpone it because there wasn't a full board to hear it, so now I'm waiting again for a new date.

  4. Well done, great news, it’s a horrendous process.
    I actually had my PIP assessment today, and you feel so demoralised.
    And some of the questions are so irrelevant.
    My assessor asked me if I made my own cheese sauce for my macaroni?!! WTF??
    Considering I use a perching stool at times what difference does it make how long I actually stir something??
    And another stupid one was when I said I only drink water or tea, she asked “what no fizzy juice or cordial ?
    What’s that got to do with my chronic pain or disability???
    Wait till you see they will turn me down because I make my own cheese sauce for my macaroni!
    Last time I was turned down because I drove my daughter to school every day.
    They are the utter underbelly of the government.

  5. Congratulations, I'm very happy for you!!

  6. I'm so, so pleased for you! I got rejected & was planning to appeal but time ran away from me & I never managed to but I think I'm going to call them & ask for an extension on the appeal deadline as I had a procedure done on my spine... ANYWAY! That's not the point - the point is you finally got what you deserve & I am so, so happy for you; maybe our country isn't totally fucked! Stay strong girly x