A big part of life with M.E. or any other chronic illness for that matter is how isolating it can be. Being too unwell to leave the house for long, if at all, makes for quite a lonely existence.
Back in 2005 when I first became ill, loneliness had more of an impact than it does now. Back then we’d not long got broadband, and only had the one desktop computer that the whole family could use. The internet was still a bit of a new thing. I went from socialising every day in school, to being stuck at home on the sofa rarely leaving the house. And when I did leave the house it was mostly for doctors appointments. There were very few ways to keep in touch with friends; the odd letter or text message was sent and received but there wasn’t many other ways to stay in touch. Email and instant messaging were just emerging, and to do that you had to be well enough to sit at a desktop computer, not just lie on a sofa.
Things have changed so much now, the internet and mobile devices make staying in touch with people so much easier. A simple message can be sent while lying on the sofa or even in bed. It also provides a place to meet people who know what we are going through, who have the same illnesses, and who can relate to how we are feeling.
Don’t get me wrong, life with chronic illness is still lonely. Nothing can ever replace real life company and conversation; actually having people there for you, offering a much needed hug and support when things get particularly tough. There are days when I’m too ill for social media, or to reply to messages, when I want the comfort I get from talking to a friend but I’m simply not well enough to put a message together or cope with the screen on a phone, tablet or laptop.
There are times I need a break from social media and using my phone, even if I’m feeling fairly okay, sometimes I just need to switch off from being online. But there are drawbacks to that too. Unless I’m well enough to be doing other things, keeping myself occupied, the loneliness sets in.
A short, simple message can literally make my day when I’m feeling particularly lonely. It can be hard for me to reach out; I don’t want to bother a friend who may be feeling particularly unwell themselves – most of my friends have similar chronic illnesses to me – because I don’t want them to feel like they have to reply to my message. But at the same time I long to have a chat with someone, especially someone who can relate to how I am feeling.
Sometimes all I long for is a hug. No pressure to talk, just the comfort that comes from being wrapped in a hug. That’s the one thing social media, and messages can’t replace. But social media and forums do help ease some of the loneliness, even just knowing that there are people at the end of the internet to talk to.
If you have a friend with a chronic illness, why not drop them a short, simple message today? You could be the only person to do so, and it can mean the world to them. Take it from me, someone who knows.