I lost all my friends when I got ME/CFS … except for the 300-odd who stuck around.

I keep seeing posts on social media from other people with ME/CFS talking about how this illness stole their friends. For most if us, not being able to go out to socialise means we lose our friends when we get sick, but I have had a very different experience.

In February 2000, my friend Charlene introduced me to some of her friends and I was quickly welcomed into ‘KAOS’. KAOS is a club on campus, originally centred around water pistol fights, but it is also so much bigger than that. Most people in KAOS aren’t actually members of the affiliated club, but the club remains the central anchor point around which the social group operates.

These friends have stuck by me for the last 20 years, 15 of which I have been sick. Even when I first got sick, and I lived in a different city, they were the support who carried me through. I have very few friends left from before 2000 – they have almost all fallen away over the years.

I have been so fortunate to have a group of friends like these. They have loved and guided me out the other side of major depressions, going as far as physically standing guard nearby when they saw I was in danger of hurting myself. They’ve fed me when I was too poor to buy food and they have encouraged me through my postgraduate study. Most of the behind the scenes work of my wedding was done by KAOS people, and they can always be counted on for a celebration. There were times when I could attend at least one drinks or party every week, if I chose, and they are famous for their annual, weekend long ’48 hour’ parties that can have hundreds of attendees over three nights.

They’ve called me out on things I could do better, and have listened when I have done the same in return. They’re not perfect, that’s for certain, but they do what they can to make life better for the other humans on this planet, and keep things a little bit silly while they’re at it.

I may be mostly housebound these days, so I don’t get to go to parties any more, but it’s people from that grouo of friends who still make the effort to visit me.
Thanks, guys, gals, and everyone else, for sticking with me.


There are hundreds of people in kaos, but I want to give a few of them a special mention (in no particular order and definitely forgetting way too many): Lisa, Phil, Sarah, Diana, Marsden, Charlene, David, Tony and Helen, Cat, Nicholas, Nataliya and Nigel, Gary and Stars, Brian, Mary-anne, Alex, Beth, Leon, Pixie, Troy, Storm, Chris, Jason, Amie, Kate, Caleb (although he would not like to be calked kaos, lol), Sophie, Meredith, ‘Beast’, Theo and Rhys, Karen, Norman, Agate and Phil, Yvette…

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