Loneliness & M.E {Loneliness Awareness Week 17th-21st June 2019}

This week, the 17th - 21st June, is Loneliness Awareness Week. It was started by the Marmalade Trust three years ago to raise awareness of loneliness amongst people in the U.K. The Marmalade Trust is a charity that was founded by Amy Perrin back in 2013. They are dedicated to dealing with the issue of loneliness & helping connect people around the country. If you want to know more about the Marmalade Trust, I really recommend checking out their website. & if you'd like to know more about Loneliness Awareness Week & how you can get involved, then you can check out the dedicated page on their site, here.

This year's theme is "to reduce the stigma around loneliness" & as I analysed my connection to this topic, it's quite a fitting one. There is an element of embarrassment & shame that comes with admitting you're lonely. No one wants to be called "Billy No Mates" but fear of getting that label can stop people opening up about the fact they're lonely. This has definitely been my experience as it's a topic that, although I've alluded to in the odd blog post, I've never dedicated a post to the subject. Which, when you consider how isolating & lonely living with M.E can be, it's quite surprising! But, with this post, that's about to change...

Quote Reads: The loneliness moment in someone's life is when they are watching their whole world fall apart, and  all they can do is stare blankly. F. Scott Fitzgerald

I will preface the rest of this post with the fact that I am an Introvert, I've never been someone who has had lots of friends & I do enjoy my own company. However, there is a big difference in being alone & feeling lonely; I have experienced both - as a child, a teen & now as an adult & while I find being alone somewhat refreshing, feeling lonely is difficult & it doesn't get easier the older you get.

By nature we are all different, some of us find it easier to make friends than others, it's just the way we're wired & there's absolutely nothing wrong with that. However, when you factor in a chronic illness like M.E, making friends & socialising becomes even more difficult. There are many factors as to why but I'm just going to highlight a few of the main ones:

  • M.E plays havoc on your sensory system - this means you become highly sensitive to light, sound, touch & smell.

I want you to think about a social gathering with your friends or family:

The room is well lit. Everyone is talking & laughing, the TV may be on or there's music playing. Hugs, handshakes & a friendly slap on the back or nudge on the arm may happen as people converse. Food smells come from the kitchen. This gathering is a feast for your senses & you enjoy every moment of it.

Now imagine you have M.E & you're faced with the same gathering:

The light in the room causes pain to your eyes, the noise around you is painful to your ears & starts to bring on a headache. Every hug or friendly nudge someone gives you causes your body to react with searing pain & the mixture of food smells make you feel nauseous! All of these cause your brain to go into sensory overload & it's struggling to string a sentence together for you to hold a conversation!

All of those things make it incredibly difficult to socialise & makes a person with M.E incredibly ill for even trying. The adverse reactions to a normal social gathering results in most people with M.E having to isolate themselves for the good of their health. We have little choice but to spend most of our time in bed, in darkened, quiet rooms.

  • Constant Fatigue & lack of Energy

Even without the sensory issues, doing anything takes up a lot of our energy. Our bodies do not produce or recover energy properly; a goodnight sleep won't revitalise us. This means that trying to socialise with friends or family becomes a huge activity & every moment has to be planned & paced. Energy is used when getting ready & traveling {if it's not at your own home} So by the time you're at the social event, you feel like you're running on empty & don't have much more to give. Socialising becomes increasingly difficult as the last ounce of energy drains from you, you feel incredibly ill, your struggling to remain standing, to speak to people, you turn a lovely shade of grey & you've only been there for 5 minutes!

This results in you returning home & spending an unnumbered amount of days in bed, in a darkened, quiet room dealing with the Post Excursion Malaise {worsening of symptoms after activity} that results from 5 minutes of social interaction.

Photo Description: "The Onlooker" A women sits on the kitchen side staring out of the window.
Copyright Louise Elizabeth Shepherd

  • No concept / understanding of Chronic Illness results in friends & family drifting away.

Being chronically ill makes you a bit of an enigma. People completely understand short term illness, like flu, colds, & tonsillitis. They also understand terminal illness, like certain types of Cancer - illness that results in the loss of life. The latter usually causes a massive rallying of friends & family who stick by you while you're sick, supporting you during the difficulties you face.

But many people cannot wrap their head around a never ending illness - one that you may see some remission in or you may loose your life to; an illness that is always with you, affecting your daily life. M.E is such an illness & the impact it has your life can be incomprehensible at times.

The truth is, the examples of social gatherings I gave above, are just that, examples, the majority of people with M.E are too sick to even entertain the idea of socialising, especially when even a one to one visitor for a short time, can leave them feel very ill for a number of days. This results in often having to say no to any or all invites you may get.

At first your friends & family are okay with this - "your health is important", "I understand, you're sick". But the longer you are ill, the less understanding some of those in your life become - "you're still sick?" "There's no point asking you, because I know you won't come". The less understanding ones pretty much all drift away & in many cases, the person with M.E is left friendless, completely isolated & on top of everything else they have to deal with, they are now struggling with feelings of loneliness.

  • The M.E Paradox

This is having people in your life who try their best to help & support you but through no fault of their own simply are not able to fully understand just how much this illness effects you. You see the thing is, no one gets it, until they get it! This again can leave you feeling incredibly lonely especially when you feel that someone may understand but then something happens to make you realise that actually they don't, at least not fully. It's the personification of the saying "You can be in a room full of people & still feel lonely."

All anybody wants is to be understood by someone else but having M.E makes that so difficult & it can make you feel like the only person in the world standing still in time as everyone around lives their lives to the full!

Quote Reads: I couldn't be with people and I didn't want to be alone. Suddenly my perspective whooshed and I was far out in space, watching the world. I could see millions and millions of people, all slotted into their lives; then I could me - I'd lost my place in the universe. It had closed up and these nowhere for me to be. Marian Keyes

As someone with M.E, you already have a lot to cope with daily but adding in feelings of loneliness due to the factors mentioned above can make it a real struggle & these feelings can even escalate into Depression or Anxiety. This then makes life even harder as you now contend with, not only a physical life long condition, but also mental ones.

This is where the online M.E community is so so important! As, although the people physically around can't fully understand, these people can. They can offer support, a listening ear, & a genuine, comforting "I understand!" & even a "Me too!" They'll even help you celebrate your small victories because only someone with M.E will truly get just how difficult that thing you managed to do was, since they have struggled to do it too.

Another wonderful resource for people with M.E is provided through the M.E Association They have a service called M.E Connect which you can either call or email for some support. All information is confidential & most of the M.E Connect team have had personal experience of M.E. They can provide you with a very understanding, listening ear or can help point you in the right direction for information in something relating to your M.E, whether it's regarding employment or something else. Also if you do phone them, you're not given a time limit, the call will last as long as you need it to.

You can email them anytime using the address: meconnect@meassociation.org.uk

The phone service is available every day of the year during the following hours:

10am - 12noon
2pm - 4pm
7pm - 9pm

Phone Number: 0344 576 5326

While the online community or the M.E Connect service may not fully take away your feelings of loneliness, it can help ease it & reassure you that you're not alone.

So this week, for Loneliness Awareness Week, lets try "to reduce the stigma around loneliness" by talking about it & hopefully each of us will feel a little less lonely because we know we're not alone in the way we feel & that there's nothing to be ashamed or embarrassed about by feeling that way.

Take care,

L x


  1. Thank you for the wonderful post. It brought tears to my eyes, as I can totally relate to everything you say.

    Having ME definitely shows you who really really truly cares about you.

    @dSavannahCreate from dSavannahRambles


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