Scarlett

Scarlett Murray is a 22 year-old mother of one, and a talented blogger about her experiences of living with Cerebral Palsy. Her form of CP is left-sided hemiphlegia. She tells us her story.

I studied English at Bristol, and since then I’ve just been doing some content writing and bits and bobs really. And I have my little baby to look after. I don’t know exactly what I’m going do with my life eventually.

I walk with a limp. I struggle to do two-handed tasks. I couldn’t carry two drinks across a room or carry a tray, that kind of thing. If I need to open something and it’s particularly fiddly, I probably can’t do it. I have quite bad coordination and balance. I’m prone to falling over a fair amount or just tripping up over my own feet and that kind of thing, but that’s it really.

About my CP identity

In the last year or so, I’ve been very much more open about having CP and proclaiming it as part of my identity. When I was younger, I was much more bent on hiding it, pretending I didn’t have it, because if you meet me, you can’t necessarily tell straight away.

I started writing a blog partly because I’d had enough of the hiding, I found it very tiring. I wanted to just have an explanation and be able to refer anyone to it, and say everything there that I wanted to say about it. The first blog post, called “Cerebral Palsy” was me outing myself, and not pretending anymore that I was not disabled. I just wanted to be free of that mental exhaustion. It was also about saying it in my own terms – I’ve had many other people describe what my CP is for me.

On transition

When I turned 18, I had my last physiotherapy appointment, having had them every six months until that point. It felt quite strange because obviously I didn’t not have CP anymore when I turned 18. It did feel like being dropped off a cliff.

I was used to people checking up on me – how my walking was doing and what my physical activity was. It was strange for no-one to be keeping tabs on that anymore. And when I was in pain, not knowing where to go straight away. Before, I would’ve just have taken that to a physiotherapist that I saw regularly. but now I didn’t know what to do with this. And the services tend to be a lot more dispersed when you’re older and you get referred to multiple different people. Before, when I was younger, they were all talking to each other a lot more.

I think that the care that you have as a child needs to continue into adulthood, in pretty much the same way.

Advice to my younger self

When I was younger, I thought that I would eventually not have CP because of the way that it was framed. I thought if I wear my splints, eventually when I stop growing, I will just walk like a normal person. I didn’t understand that I would improve within my own range, but there was a limit on that range.

I think to my younger self my advice would be, self-acceptance will come eventually: I wouldn’t have such an uncomfortable relationship with my CP forever.

What I want people to know about CP

That CP is a lifelong condition, and that there is a very diverse range of how CP presents. I don’t think people know that at all. I’ve told people I have CP and they’ve said, ‘no, you don’t’ because I don’t have it as severely as they imagine people to have it. I think that CP is very, very misunderstood by non-disabled people.

For medical professionals, they need to know that people with CP can come to you when it’s not obviously or mainly about CP. For example, when I was pregnant, I don’t think that there was enough awareness of what CP was. I was in a lot more pain, a lot sooner, than a non-disabled pregnant person would have been, because I can’t carry heavy objects very well. I had lots of pain on my left side that needed attention as a CP problem, but it also needed attention as a pregnancy problem. There wasn’t enough mesh in the care to recognise that those two things had combined and made a very unpleasant experience for me.

I also need to be aware of this. I had a pain all down my left side, and because I’m so used to having pain in my left leg because of my CP, I didn’t recognize it as anything other than CP. And so I didn’t tell a doctor or think that it could be anything but CP, and it turned out to be sciatica. I missed out on the correct treatment for a few months because I wasn’t connecting the dots.