Natalie lives in Wales with her husband and two daughters. In 2012 she was diagnosed with Usher syndrome.
I’m Natalie, I’m 38 and I live in Ebbw Vale, Wales, with my husband and two daughters. In 2012 I was diagnosed with Usher syndrome, which causes deafness and gradual sight loss. My symptoms became so bad that I had to stop working in 2016.
Going out has become increasingly difficult and I lost my confidence and independence with the loss of my sight and hearing. I find it so distressing having to go out as I know what I am going to face. The looks and abuse, all because we look ‘normal’ on the outside.
Soon after my Usher diagnosis, I started receiving a service from Sense. Twice a week, a Communicator Guide would visit me and together, we’d could do all the things that I’d wanted or needed to do. We’d go shopping or attend doctor’s appointments, but most importantly, this time together helped me to increase my confidence in accessing my local community.
Being diagnosed with Usher syndrome is a very isolating experience, but through Sense, I began to feel less and less alone. They even introduced me to Leanne, who was also newly diagnosed with Usher syndrome.
Together we met up and shared our experiences. It was so important for us to chat and meet up with the support of our Communicator Guides. We grew so close, Leanne even asked me to be godmother to her daughter. I will never forget that day.
As the global pandemic took hold, services like my Communicator Guide had to be stopped and once again, I found myself homebound.
I can’t go out by myself. I can’t hear well enough to use the phone or see well enough for video calls, so it’s hard to keep in touch with people. Since the first lockdown in March, I’ve lost all my independence that I’ve worked so hard for.
I know it’ll take a while before the world becomes as accessible as it was before for me. My hope is that there’s more disability awareness when everything opens up and I can leave the house without feeling as cautious. With the support of my friends, family and communicator guide, I’ll slowly gain back my independence but, with the support of my local community, that independence will come back quicker than ever.