Patient Voices #BreathlessNotVoiceless

Alysha Sharma

“It’s embarrassing having to claim benefits at such a young age”

Alysha, 23, has been battling the benefits system to claim what she is entitled to. This is her story.

“Before diagnosis, and before my symptoms started, I was earning good money in my part time job as a carer alongside my degree. I was able to go out and see friends, but I can’t imagine ever being able to do that now. I had to cut down my hours because it was such a physical job and now, I’m not able to work at all.  

I applied for PIP (Personal Independence Payments) before I had to stop working. My assessment felt like an interrogation and the assessor, a nurse, clearly didn’t understand my condition.

It was really intimidating, and l had to pour everything out to her, but I felt like she didn’t really listen.

I was initially awarded the lower rate for PIP which was ok at the time, but now I’m struggling to pay my bills, so I appealed for the higher rate. I was turned down, so it’s now going to a tribunal.

I’m still waiting for a date for the tribunal; all I’ve had is an email telling me they are really busy. I’m worried about it. There’s a lot of pressure. I’ll be sitting in front of people I don’t know and pouring my heart out, but I feel like it’s the only way they are going to understand how difficult this condition is to live with and how massively it affects my life.

Physically, I feel better than I did as the medication is helping. Emotionally though, I have no confidence. I have anxiety and I don’t believe in myself anymore – which is really hard.

I’m struggling. I don’t want to have to rely on my parents to keep bailing me out. Waiting for a tribunal date feels like being in limbo. I want to get in front of them and explain why I need the help, but at the same time I’m scared of being rejected.

My message to those making decisions is this: It’s easy for someone to sit and judge but not actually know anything about the person there in front of them. Be more understanding. You’ve no idea what it’s like for someone who has always been well and never claimed benefits, to then have to go through all of this to justify what they need. To hear a ‘no’ after it all is really hard.”