Living on PIP - Catherine's story

Catherine shares their experience of being signed off work due to their mental illness and physical disability. They explore the importance of Personal Independence Payment (PIP) and how it enables them to have a better quality of life.

The author has chosen to remain anonymous. While they wanted to share their experience of claiming PIP for a mental health condition, they felt it was important to protect their privacy given the stigma that still surrounds disability benefits and mental health.

I live with anxiety, depression, chronic pain and autism spectrum disorder (ASD). I've also had quite a long history of self-harm and being in crisis. With my autism, a lot of anxiety and stress comes from my environment. I have difficulties with processing, loud noise and going to new places. This can easily lead to panic and sensory overload. I’ve recently found out that these instances of overwhelm can lead to flare-ups in my pain.

Being signed off work

I last worked between 2017 and 2021. During that time, there were several crises because of stress and not being understood or supported as an autistic person. After injuring my shoulder in 2019, I was no longer able to work in the role I was doing. I moved to another team, but stress affected my mental health to the point that I was signed off again. I tried to return to work, but experienced another crisis and spent time in hospital. I haven’t worked since and have been on PIP, as well as Universal Credit with limited capability to work, which is not enough to live on. 

Getting PIP was a stressful, long process. I had to have help with the forms from support workers because I definitely wouldn’t have been able to do it myself. It took four months for me to gather all of the evidence needed and complete the application.

I’ve been physically unable to do the things I enjoy, which makes me quite depressed. There have been many periods of burnout where I’ve not interacted with anyone. There have been times when I’ve tried to get out of the house, but found that I’m actually too tired, in too much pain or there’s too much noise, and it becomes a day where I don’t do anything productive or enjoyable.

Why PIP matters

PIP has improved my quality of life. I’ve used PIP for food groceries, to support temperature regulation and ways to stay cool during the heatwave, to pay for things that will support my health, like a walking stick. PIP has also helped me to stay connected to my community and be independent, like going to the cinema, taking myself to a cafe or the theatre.

People might see these things as a luxury, but they actually keep me going. If I didn’t have PIP, I wouldn’t be able to do the things that keep me from being isolated or stuck in hospital. If I don’t have things to look forward to, it brings me to a really dark place.

It’s important for people who have mental health issues or neurodivergent conditions to get out of the house and be distracted from the difficulties they’re experiencing. People living with invisible conditions face so much stigma already.

This experience is far more common than many people realise. For people living with anxiety, depression, or neurodivergence, applying for PIP is often a difficult and stressful process that may or may not work out for them. Find out more about the challenges within the current system in our recent report Rethinking PIP, and what we, alongside people with lived experience, believe needs to change.