There’s not enough help out there

I’m 22-years-old and was officially diagnosed with relapsing MS in February this year, after losing my eyesight in May 2021. Then my hands went numb and I couldn’t use them properly. I do art and graphic design, so to lose movement in my hands was really scary. 

I’ve also had ankle problems since being a child and have had two surgeries on my left leg. I was told I could develop early arthritis, so when I was having all these problems I thought I already knew the answer.

I can’t afford to cut down on work to benefit my health

At work, I get exhausted from walking around. My arms and elbows get achey, and I’m in a lot of pain. I work full-time and want to cut down on a day, but I can’t afford to. I often have to call in sick because of my MS, but that means missing out on money.

I really struggle to walk to the bus stop to get to work, so I often end up using Uber, which costs £8 or £9 a trip.

The cost of living independently

I’ve been lodging with a friend for two and a half years – we share a room because there’s not that much space. Rent has gone up at my friend’s place, and we’re spending more to top-up gas and water every week.

I’m in touch with Centre Point and I’ve also had help from a local charity called Pathfinders. I found a flat to move into recently, but it all fell through because I didn’t have a guarantor.

Prescription charges can mount up

I get really bad headaches and my neck and back are always in pain. The prescription charges for these medications are very costly – I spend around £20 to £30 every time I have to pick up a prescription. My prescriptions often change because they are still trying to find the best ones for me. So I’m left with lots of old medication and have to buy new ones.

My nurse has also recommended seeing a chiropractor, but I can’t afford this.

It’s exhausting trying to get heard

I constantly get passed around from my nurses to doctors to my GP. They do their best to help but a lot of the time I’m waiting for a phone call back. And by the time I get one, I forget what I needed to talk about and ask, because of my memory now. I have to write everything down so I don’t forget and so I don’t miss anything out.

Since I started getting symptoms, I’ve had to repeat and repeat how my body feels. Sometimes I just don’t have the energy to keep explaining, because I feel like no one gets it.

I’m not confident the benefits system will understand my MS

I applied for PIP a few months ago, but I’m still waiting to hear back. I’m nervous about the assessment as I know that lots of people have been rejected. I’m worried that the day they call or want to see me I might be having an OK day. They might not see how it is for me on the other days.

I didn’t choose to have a disability

I have to live with MS for the rest of my life, just like other people with disabilities. My message to the government is: we didn’t choose this, it chose us – so why should we have to suffer and go without?

Since being diagnosed, my life has done a full 180, constantly waiting for answers and for help. I’ve had people look me up and down because I look like I’m fine on the outside. Mental health is a huge part of it, but people forget about this side of having a disability. 

I took part in this campaign because there are so many of us not being heard. I feel we’re out of sight, out of mind. I want to speak up for every one of us.

You don't have to face challenges alone. Find out about extra financial support you could get, as well as disability benefits.

You can also speak to our MS Benefits Advisor through our MS Helpline on 0808 800 8000 or email [email protected].