I met a friend with ME for coffee. It was so good.

Last week, I met a friend with ME IRL for the first time. I’ve decided to write about this and save my second critique of Wired’s controversial article, The Painful Truth About Long Covid, for a future post.

Henry and I first spoke six months ago over Zoom. A mutual friend, who sadly still has very severe ME, had put us in touch. We live fairly close, but at the time he wasn’t well enough to meet in person. We chatted about our illness trajectories, how we were managing our symptoms, and football. When I recently returned from my travels in Latin America, I was thrilled to hear he’d improved - from 20% to 40%, I think he said - and wanted to meet up.

Henry has been ill for six-and-a-half years. Before ME, he’d been very active, working as a sports massage therapist, trying to set up his own company, and loving life. Over our Zoom call and texts, I sensed this vigorous energy was still there, despite everything the condition had taken from him. He’s tried a long list of things to get better. Like many with ME and Long Covid, he’s a living rebuttal to the idea that we are lazy, malingering, or not trying hard enough.

We met in a town called Macclesfield, in between where we both live, and chatted for an hour and a half over coffee. I haven’t met many others with ME in person - many are too ill, so most of the community exists online. But when I do, there’s an immediate rapport. Before we speak, we can guess what the other has been through: the confusion when the illness hit them; the fear when it wasn’t gone after a few weeks, then a few months; the slow, painful acceptance that they had a serious chronic condition with no guarantee of recovery; the crushing disappointment of going to the doctor and realising they didn’t have a clue; the exasperation of trying to explain the crushing symptoms to loved ones and only finding flimsy terms like ‘fatigue’ and ‘brain fog’.

Not being able to share these experiences with people who’ve been there leaves emotional baggage unprocessed. So when Henry and I met, the dam burst, and many pent-up opinions, grievances, and frustrations poured out. We talked about our lives before and after the ME wrecking ball, what’s worked and what hasn’t, and those who showed up for us.

As I write this, I’m trying to recall the specifics of our conversation, but I can’t. What sticks with me is not what we said, but the feeling of resonance, the rhythmic yes, yes, yes that ran through my mind as he said things I’d long felt, and the welling up of thoughts I wanted to get off my chest, which he often responded to with a wide-eyed ‘Yes!’

ME can be very isolating. For many, it’s made worse by being too sick to fully engage with the community, the only ones who truly understand what it’s like. But there are people everywhere hidden away with ME, some much closer than you might think. I know of quite a few others who live nearby, and whoever I talk to about ME knows someone with it - hardly surprising when the UK prevalence estimate is 404,000, and 1.2 million if you include Long Covid.

Earlier, I mentioned the mutual friend with very severe ME who put Henry and me in touch. She lived a few streets away when I was very ill and had been in the year below me at school. She reached out after I wrote about my experience for #ThereForME. If not for that, we’d never have known someone was going through the same thing so nearby, and I’d never have met Henry.

So, yeah, I met a friend for coffee. Not something I’d usually feel the need to write an essay on. But after many years living with a condition that so few understand, chatting about it with someone who does, especially in person, can be surprisingly cathartic.

We’ve agreed to meet up again soon.

You can subscribe to Henry’s Substack, @thehealingarena.