Names have been changed for privacy.
Since I was 11, all of my friends minus one have been “online friends”. Certain illness communities really do form communities around each other. We commune. We have extensive networks of friends of friends. We give help, share secrets, and take advice from one another.
My mum once was on a train from Sheffield to London and got chatting to a young woman from Devon. She told the woman about me. What condition does your daughter have? Oh! My friend has that. It would be funny if they knew each other. My friend’s name? Kat. They won’t really know each other though, Kat lives in Dorset. Yes, that’s right, Dorset. Oh, her last name is Edwards. Uhh, yeah. She does have a brother called Tom. How did you know? What!? Kat Edwards has been round your house!?
Another time my grandparents went to peruse the market in the nearest village. They talked to another couple about their granddaughter who it turned out also had ME. My grandparents told me about it that evening and said, “She’s also ill and also uses a wheelchair. Do you know her?” A lot of people might think this was a stupid question. But it wasn’t. It turned out I did know her.
My local library has a book in it written by an friend whom I’ve never seen in person but who’s face I know well online.
We really are a secret society of friends.
So when one day someone arrived at the group and instead of hello looked me in the eye and announced “I know Eccleston!” it was the perfect salutation.
Hello, and welcome to the tribe. Good to finally meet you in person. I recognise you as one of our own.
Because of the group, I’ve been lucky enough to meet in the flesh three “online friends”. I’ve been lucky enough to make even more offline ones.
The picture above was taken of a meeting with someone whose brain and voice I’d had the pleasure of knowing but never had seen him in person. He had a ukulele and was not afraid to use it.