June 20, 2019
oneliness can affect anyone regardless of who they are. However, some people are more vulnerable to these feelings than others. Preliminary results from our Big Survey on living with M.E./CFS in the UK and polls done on our social media demonstrate that the majority of people living with M.E./CFS in the UK feel socially isolated due to their condition.
As part of Loneliness Awareness Week we want to start a conversation about what it’s like to live with a chronic illness and feel lonely. So far, we have shared tools to help you talk about M.E./CFS with the people you are close to – you can find these here. Now we want to share with you different services that can support you to get connected.
M.E. Friends Online
Our forums are open spaces for anyone affected by M.E., including carers, where you can speak about your experiences, offer and receive advice and speak with others who understand what you're going through. You can sign-up for free and by doing so will be able to access information and mutual peer support from those already on the forum.
"M.E. is a total life changer. In the early years I had never felt more alone, confused and frightened. However when I found the forum I was able to reach out to others in the same situation as myself and that was invaluable. We laugh, cry and sometimes scream on here without judgement or criticism, but with friendship and with compassion for each other."
Children and Young People’s community
Living with M.E. can be hard, especially if you’re aged 18 and under. M.E. can make it difficult to spend time with friends or family and can have a big impact on your life, including school and hobbies. Joining our Young people's community is a great way for you to talk to other people your age who have M.E. Some are more severely affected than others, but even if their experiences are different to yours, every member of our community understands what it’s like to live with M.E.
When speaking about the Young Member's forum, one young person told us that, “there are so many great things about the forum, but the best thing for me is how it helps to keep away the feeling of isolation from the rest of the world. The fact that I can communicate with other people on here – who actually understand M.E. – really helps me feel less lonely.”
If you live in Scotland, why not try Mentor M.E.? This is a mutual peer support network offering support for people who have been affected by M.E./CFS. As a mentee, you will be matched with a peer mentor who can offer support and a listening ear, someone who can share their experiences and insights into living with or caring for someone with M.E. If you care interested in this free service you can contact Avril McLean, Mentor M.E. Project Worker, by email or call 07753 247099.
Low energy hobbies and online virtual worlds
If you are able to, learning a low energy hobby may help you build confidence and access non-M.E./CFS related online communities. This can range from poetry, art, cross stitching, or photography. All have thriving online communities, which you can be a part of too.
Mathilde has M.E. and uses Second Life a virtual online world. She tells us that “people with every imaginable interest and background go to socialise and live a virtual life, using avatars like you would in a video game, then you have a better picture.”
M.E./CFS has a thriving online social community which encourages people with M.E. to share information, advocate for the condition and offer information about M.E./CFS and the services that are available. By joining others online you can get involved with the most recent M.E./CFS news or take part in popular hashtags such as #Spoonies and #WildlifeFromMyWindow. You can find us on Twitter, Facebook and Instagram.
Age UK’s service Call in Time is a free telephone friendship service for people 60 and over. They'll match you up with a likeminded people who are keen to make new friends, and every week they'll give you a call.
Befriending provides support for people who are experiencing loneliness or social isolation, which can affect anyone at any stage of life. You can use their free online directory to find a local befriending service near you.