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Living with M.E.

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You are not alone

You are not alone

Many people with M.E. report feeling isolated at some point.

“The most isolating thing for me is that very few people in my life understand what the condition is and how it can be so paralysing. I don't have the cognitive ability or energy to even begin to explain what this illness is, let alone what it feels like.”

You are not alone: this feeling is familiar to many people living with a chronic condition. We asked people with M.E. how they coped with these feelings, and have shared their tips and experiences below. If you would like to add your own, please get in touch. You can also read blog posts by Lorna and Rosie, who talk about their own experience of M.E. and isolation.

  • Wendy: “My daughter is severely affected and lives in the silent, dark world of one room. As an onlooker, my advice is to find a positive in every day, reward yourself and take pride in every small thing you achieve. Concentrate on making today as good as it can be.”
  • Lisa: “Try thinking of things you can do on your own without the need for others. I’ve had a bit of a relapse so have been off work and bedbound for months. At first I got lonely, bored and depressed but now I have been reading books I haven’t read for years, and new ones. I have also been enjoying colouring. I keep in touch with friends and colleagues by text and WhatsApp as there’s no need for an instant response. It’s still hard, but try to be positive and think about what you can do instead of what you can’t.”

Some of our supporters recommended particular books.

  • Janet: “I take solace from reading the book How to live well with chronic pain and illness by Toni Bernhard.”
  • Ditzy: “My family borrowed a book from the library called CFS/ME support for family and friends by Elizabeth Turp – it helped me and them to understand my illness and my feelings about it.”

Others found ways to continue creative pursuits in a way that works for them.

  • Spencer: “I find colouring therapeutic but at times struggle with using my hands so have recently found a colouring app. That's been brilliant as I can still enjoy being creative but don't have the same pain.”

Those who were well enough to leave the house had some great ideas.

  • Sharon: “If I feel lonely I try to get out in nature. I know I'm lucky to have that option most days. I have a park right behind my house. I put clothes over my pyjamas sometimes!”
  • Tilly: “When you spend a lot of time by yourself, it’s hard to make friends. Meet-Up is a great way of finding like-minded people and getting out of the house when you feel able to – but if you don’t turn up you aren’t letting anyone down.”
  • Ann: “I was very isolated from my walking in the countryside until I got a scooter and visited National Trust and English Heritage properties. Many have disabled access and some can lend a scooter. It was so wonderful to be back out in our glorious countryside even for very short periods.”

Others recommended ways to connect online.

  • Lisa: “What I struggled with was not knowing anyone else who has M.E., so I felt even more isolated and misunderstood. I’m glad I found the Action for M.E. Facebook page. I still try to look at the positives in my life rather than the bad things (but on a bad day that all goes out the window). I congratulate myself for little achievements like making a phone call I have been meaning to make or sorting out some paperwork."
  • Olivia: “Just remember that you're never alone in your battle. We are all going through it with you and I find when feeling really alone I love to put on a YouTube video – it's like someone is always there and there's so many videos to choose from.”
  • Freerangecat, on our M.E. Friends Online forum: “This might sound crazy but one of my friends has played back to back games of Words with friends with me for more than two years. He lives three hours away, but that little bit of contact, with a bit of chat on its chat page sometimes (but not always), has really kept me going, and our friendship has grown massively. I play on my tablet and he on his phone.”