Getting a bit of my life back

Natalie was diagnosed with Usher syndrome when she was 29 years old. She’s had to work hard to rebuild her sense of self. Now, Natalie has found confidence and strength in her voice as one of our campaigner champions.  

I had quite a late diagnosis, so for most of my life I felt no different from anybody else. I know now that I’ve got Usher syndrome type 2, which means that both my hearing and my vision are affected. 

I’ve always been quite a positive person, but my confidence was really knocked.  

It wasn’t safe for me to keep my job because I was having accidents, like tripping over. Giving up the only work I’d known was such a struggle, I didn’t know what I was going to do. 

Finding some freedom

Fortunately, my local council were lovely. They put me in touch with Angela at Sense and it just went from there. It felt like I was talking to a family member because she was so nice and understanding.  

She set me up with my amazing communicator guide, Kath. She’s still with me today. Kath makes me feel safe and more confident.  

I had become self-conscious about using a cane in public or even traveling with my disabled bus pass. It was the idea of being judged by other people that put me off. 

But Kath pushed me to get past my embarrassment and now I go out more – I’ve got some freedom. From shopping to hospital appointments, anything I need her for, she’s there. 

Sense showed me I wasn’t alone 

One day, Angela told me that she’d recently been in touch with another young woman who was struggling with a late Usher diagnosis. I agreed to swap numbers and offer her some support. 

Her name was Leanne. We started texting and sharing our experiences and everything she said just clicked. It was strange. Leanne had felt exactly the same things I’d felt. She also had the letter dropped on the doormat. I know what it’s like to sit there and open that by yourself. 

It was so nice to have someone to talk to, someone who knew where you’re coming from. We kept messaging and then met up on my birthday. We’ve been inseparable ever since. 

Campaigning gave me a voice

Through Sense, I was able to keep working to support other people like me. My first campaign was Left Out of Life, raising awareness of disabled people who’ve been isolated during the pandemic. 

Being involved in this – doing recordings, being on posters – it made me feel really good. I hadn’t felt like that in a long time. 

I used to be quite laid back and not talk about how things were affecting me, but that’s changed. I know now that I want to use my voice to reach people who might be struggling.  

The work I’ve done with Sense gave me a bit of normality, a bit of my life back. It means a lot. 

Follow the link to find out more about Natalie’s brilliant work on our campaign Left Out of Life.