Loneliness and M.E
ID: A graphic with a light blue background and the words Loneliness and M.E written in white in the middle. There is a star in the top right and bottom left corners and a Blue Awareness Ribbon in the bottom right corner.
Hello friends,
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 and I do enjoy my own company. However, there is a big difference in being alone and feeling lonely; I have experienced both - as a child, a teen and now as an adult and while I find being alone somewhat refreshing, feeling lonely is difficult and 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 and there's absolutely nothing wrong with that. However, when you factor in a chronic illness like M.E, making friends and 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 and smell.
I want you to think about a social gathering with your friends or family:
The room is well lit. Everyone is talking and laughing, the TV may be on or there's music playing. Hugs, handshakes and 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 and you enjoy every moment of it.
Now imagine you have M.E and 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 and starts to bring on a headache. Every hug or friendly nudge someone gives you causes your body to react with searing pain and the mixture of food smells make you feel nauseous! All of these cause your brain to go into sensory overload and it's struggling to string a sentence together for you to hold a conversation!
All of those things make it incredibly difficult to socialise and 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 and 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 and every moment has to be planned and paced. Energy is used when getting ready and 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 and 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 and you've only been there for 5 minutes!
This results in you returning home and 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.
No concept / understanding of Chronic Illness results in friends and family drifting away.
Being chronically ill makes you a bit of an enigma. People completely understand short term illness, like flu, colds, and 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 and 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 and 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 and 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 and in many cases, the person with M.E is left friendless, completely isolated and 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 and 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 and still feel lonely."
All anybody wants is to be understood by someone else but having M.E makes that so difficult and 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!
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 and 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, and a genuine, comforting "I understand!" and 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.
Many M.E charities also offer support for people with M.E and they can be a great source of comfort when you need an understanding, listening ear. One of these charities is Action for ME and they offer a wide range of support for people of all ages. They have a a lot of helpful information on their website that can help you navigate life with M.E. But they also offer a phone service in which you can speak to someone when you’re struggling or feeling overwhelmed.
The phone service is available Monday to Friday from 10am to 4:30pm
Phone Number: 0117 927 9551
You can also contact them by email any time, if verbal communication is difficult.
Email Address: questions@actionforme.org.uk
While the online community or the supportive services offered by many M.E charities may not fully take away your feelings of loneliness, it can help ease it & reassure you that you're not alone.
Stay Safe.
L x
