Loneliness, ME and the benefit of local support groups by Bill Clayton | 21 June 2019

June 21, 2019

Bill Clayton, The York ME Community

Lonely. Just saying the word makes you feel more depressed than before you said it.

What does it actually mean?  It’s maybe something with a different meaning for different people. I’ve heard people say that despite living in a busy city full of people like London, they can still feel lonely.

Then again, someone alone in a boat in the middle of the ocean might well be extremely happy and content with their lot.

My un-researched view is that loneliness is down to restrictions placed on you where you’ve had no choice in the situation. 

If you have a busy working and social life, mixing with friends, family and meeting new people, sometimes you fancy a night off from it all; a night in on your own. It’s probably bliss, not at all lonely.

What if the next night you stayed in, and the next day, and the next and the next? You’d probably start getting a bit twitchy, a bit of cabin fever, and feel the need to get out there amongst human folk.

Loneliness and M.E.

Imagine you’ve been used to that great work and social life, then one day it’s all taken from you. Bang!  It’s gone. This can happen when you’re hit with a Chronic Illness.

I was hit with Myalgic Encephalomyelitis (M.E.) thirteen years ago, and although the loneliness didn’t hit straight away, it didn’t take long for those I once saw on a regular basis to stop getting in touch; for a night out, to see how I was, to go to the football, for any reason at all.

When you’re in this situation, you soon learn who your true friends are, and of those who feel that you no longer fit with their social pattern anymore. 

The only thing you can do to gather some energy is to pace your activities, and these activities can be very minor – such as taking a shower – so to manage a night out can be impossible for many.

This was my situation and as friends and work colleagues dropped away, I was angry at what this illness had done to me and didn’t want to be this new ‘me’ that I was becoming. 

I hated being ripped from all the sport I used to do, the work I did and the social life I had, but it happened, and yes, I felt very alone. Lonely.

It was clear to me that I wasn’t the only one in this situation and through social media sought out others with M.E.

This at first was to learn more about the illness and to find out what I could about dealing with it, but I was soon to find there wasn’t very much I could do.

What I did find was that there were thousands of others in the same leaky boat, joining groups for help and support and to help counter the loneliness that had hit their lives.

Although I found some new online friends, I felt quite helpless in lending much support as they were spread across the world.

Local Support

I wanted to help, make some sort of difference and so thought it was more of a possibility closer to home. 

I therefore set up a website called The York ME Community to fulfil a number of functions, one being to let those in York struck with M.E. know that we could lean on each other. 

This element has since moved to a Facebook Group for local people, where it is so much easier to lend real, ‘knock-on-your-door-for-a-cuppa’ support. 

Going by the most recent research, there are likely to be around 800 – 1,000 people in York with M.E. 

The Facebook Group now has around 165 members who have somewhere to go when the feel alone with their illness, when friends and in many cases family, have deserted them. 

We now have somewhere we can go for support from others who won’t judge, and many have become real friends, as we meet up and chat, and feel that little bit less lonely.

  • You might also like to read this blog from Louise who shares her experiences of loneliness and M.E. and the benefits of having an online community of support when times are tough.

Loneliness Awareness Week – 17-21 June 2019

It was started by the Marmalade Trust three years ago to raise awareness of loneliness amongst people in the U.K. Their mission is:

“To create a society where people freely acknowledge that loneliness can exist and will actively support those experiencing it to increase their social contact and make new friendships.”

If you have M.E. or are a carer of someone who does and would like to reach other people also affected by loneliness or isolation, then you might consider:

  • the ‘New Friends’ column in ME Essential magazine – if you are a member of the ME Association – that is proving really popular,
  • contacting the ME Connect telephone helpline with its fully trained volunteers who really are good listeners,
  • joining the discussions on the MEA Facebook, Twitter and Instagram pages where you will find others in a similar position,
  • contacting a local M.E. support group to meet people in your area either virtually or in person.

And, if you’d like us to try and put you in touch with people in your area, and you can’t find a local support group, then please let us know via email.

We hope to do more with Marmalade Trust in 2020 to help raise awareness of loneliness and how it can affect our community.

The ME Association

Real People. Real Disease. Real M.E.

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.

ME Association Registered Charity Number 801279

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