Speaking the same language

Getting the right support is vital – but there’s nothing like talking to someone who knows what you are going through. Shaanvir Rehal describes how special friendship between Leanne and Natalie has made all the difference.  

For anyone, losing your vision and hearing can be an isolating and lonely experience. Especially when this information is dropped on you by a letter in the post. This is what happened to Leanne about seven years ago. She went to the doctors for a routine appointment only to be told in a letter that she had Usher syndrome.

Usher syndrome is a degenerative condition that affects people’s vision and hearing causing it to slowly worsen over time. For some people, this can start from birth but for others, they can experience this later on in their lives and simple tasks like going to work or visiting friends can seem difficult and daunting.

Luckily, Leanne had her family and her daughter who were really supportive, and after a referral, Sense came on the scene. One of the things that concerned Leanne was how the condition would affect her ability to work. Angela Graham, Sense’s Operations Manager for South Wales, knew that with the right support, Leanne would be able to adapt to new ways of working. She offered to source some specialist Usher syndrome training and support, through Sense’s Usher team, to help both Leanne and her manager understand the condition. “She spoke to my manager,” says Leanne, “and explained what I was entitled to, and five years later I am still there! My manager has been very supportive and I have a taxi through Access to Work.”

“I am thankful to Natalie. She is the only person I can speak to when I am having a bad day with Ushers.” – Leanne

Soon after Leanne’s diagnosis, in another part of Wales, another letter arrived. This time it was Natalie who received the news. Like Leanne, she was told that she had Usher syndrome. “I got diagnosed with Usher Syndrome Type 2’” says Natalie, “and I was really struggling accepting my condition. I lost all my confidence and after giving up my job it was even harder. Life was lonely even though my older brother also has Usher. It was hard to talk to people that didn’t have it and no one understood at all. I felt a burden to everyone.

“So I was referred by the council to Sense and Angela came to visit me at home and gave me loads of information as well as emotional support. Sense has been amazing. They have helped me gain confidence and made me feel human again, that I’m not a burden to anyone. I have a Communicator Guide every week and I’m entitled to eight hours. The support they give is fantastic and they invite me to every event they have.”

Even with all the different types of support Sense offers, sometimes, just talking to someone with similar experiences is the best thing. Angela knew this and, after asking Leanne and Natalie’s permission, they exchanged numbers. They spent a little time texting and soon arranged to meet up.

“Our friendship means the world to me as well as being Godmother to her daughter too.” – Natalie

Nervously meeting each other for the first time was a huge step for both of them. Having emotional support is important for everyone but talking to someone in a similar position to you is invaluable. Soon Leanne and Natalie found that their shared experience opened the door to wider conversations. “I am thankful to Natalie, say Leanne. “She is the only person I can speak to when I am having a bad day with Ushers.”

That was about four years ago. Since then, Leanne and Natalie’s friendship has blossomed into something special. They talk regularly and meet as often as they can with their Sense Communicator Guides. “We have a special friendship,” says Natalie. “We understand each other so much and it’s more like she’s my sister because we’re so similar. We talk about everything in our lives – growing up with the condition, how it affects us and our fears for the future. Our friendship means the world to me.”

When they first met, Leanne was concerned how her condition would affect her having a family in the future. Since those scary first few years, Leanne fell pregnant with Natalie – and when Leanne asked Natalie to be her child’s Godmother, both knew what the answer would be. They had been through too much together for either to say no.

Loneliness can take many forms and can come from anywhere, including an unexpected letter in the post. 53% of people with disabilities suffer from loneliness and without the right support, the effects can be hard to deal with. Through Sense, Leanne and Natalie found and continue to support each other. Their friendship proves that even in the most difficult of situations, something wonderful can blossom. For them, the right support came from an unexpected friend.

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