The power of connection

This blog was written by Bev, about her experience of disability and online community, in support of our series of infographics looking at the wider social determinants of health.

My name is Bev and I’m 45 years old. I’ve been married twice and I have three beautiful children from my first marriage (two sons and a daughter).

I started having hearing problems in 2015. At first, I just noticed that I was turning the volume up more and more on the TV. But, eventually, I was admitted to hospital with serious infections, and I lost all my hearing.

Not long after that, I started to have numbness in my hands and my feet and I was referred to a neurologist. Eventually, I was given information on 'Sweet’s syndrome', which matched my symptoms. Due to nerve damage, I now suffer with ataxia, vertigo and peripheral neuropathy, all of which mean I have real problems with my balance and coordination, and I also have other physical and mental health symptoms.

Feeling vulnerable and alone

Being deaf has really affected me. It’s so hard communicating with people. I feel that no one has the time to write things down for me, and if I can’t understand what they are saying, they roll their eyes and tell me it doesn’t matter. It makes me feel scared to leave the house, as I feel vulnerable and alone. Close friends, people I’ve worked with and socialised with, have all disappeared.

Doctors have ignored me and spoken to my husband instead. I get treated like a child or they leave me out of conversations, so I just sit there. I can’t remember what my children sound like, and it hurts knowing I will never hear them say, ‘I love you, Mum’ again.

Finding support and connection

Things only really started to change when I met other disabled people who understood my situation. My local deaf support group have been great. They helped me fill out benefits claim forms and even came to my tribunal, telling the courts how disability affects me every day.

But I feel really emotional when I talk about the online community I’ve met through Scope.

Scope provides advice and information around disability, and moderates an online disability forum that I’ve found invaluable. The people I’ve met there are so important to me and have made me feel truly supported and included.

I found out about the community when I was desperately searching online for someone to help me with benefits. When I first logged in, the response I got from the community was overwhelming. 

They are an amazing group of disabled people, who help and support other disabled people. Whether you’re disabled or you look after a disabled person, there’s always someone there to help you out. They supported me through my benefits nightmare, sharing their experiences, giving me advice and encouraging me not to give up.

Talking to people who have similar disabilities has made me feel like I’m not alone. They have helped me to talk about my feelings and not worry about being judged. They’ve signposted me to organisations who can help me get the equipment I need at home. They've given me emotional encouragement when I was feeling low and helped me deal with society and how others see disabled people. 

I visit the forum nearly every day. I talk to people on the forum or talk to people privately, whether that’s giving advice, sharing experiences or just talking to them about how my day has been. I’m now able to give advice to other members of the community about benefits, and I make a point of welcoming new members to the community.

Some of the community have become good friends. I feel I can talk openly with them because they have been in my situation, they know how I feel and what I’m going through. In particular, I’ve made one really close friend there. We support each other and talk all the time – just about our day and what makes us happy.

I still have nights where I cry myself to sleep, but I know this community is always there for me. They have become a part of my life; my family and I will always be grateful to them.