Hi all!
I hope you’re all doing well and have better weather than we do here in London today. It feels like winter has well and truly set in (not that we had much of a summer to start with)
Anyway, enough of me being a stereotypical Brit moaning about the weather.
Today’s newsletter is a short one, and I’d be so grateful to get your help!
Community
Throughout my Long Covid journey, community has been something I’ve had a rather love/ hate relationship with.
On the one hand, I have met some of the most wonderful people (both online and in person) thanks to this illness and made some deep friendships. There is something truly special and unique about the bonds you make during such dark times, there is an understanding you both have of what each other is going through, something even those nearest and dearest can’t understand.
On the other hand, I have experienced the depths of despair and unpleasantness on the (IMO - dreadful) Facebook groups. Whilst there are some gems of useful information there, and a real sense of validation, I found them to be a great source of misery and negativity when I spent too much time in them.
A different sort of community..
That being said, I think community is simply an invaluable resource, and a positive, empowering one is what I have tried to foster in my socials.
I now wish to make this more of a connected reality. A place where people can connect and share positivity and success, yet be real with the difficulties they are facing. A place where they can seek help, access resources, and gain information in a way that will help them.
I'm looking to build a positive, supportive community of people on a mission to get better. Put simply, the aim is to connect like-minded individuals and share advice, offer support and learn from one another ❤️
I'm trying to figure out what sort of stuff you'd like to see in the community - the goal is to produce stuff that's going to provide you value.
Any feedback is appreciated!
If you could react to the poll that would be amazing, and any comments with other feedback would also be greatly appreciated! 👇
Thanks again for you ongoing support ❤️
Well, you can only choose one option in that poll it seems so I picked one, but most of it appeals to me. And I very much agree; I have all but left those Facebook groups and I’d rather be around those who are hopeful.
Thanks Harry! Winter here too in the Pennines today. To be honest, I lasted till July 2020 on the Facebook groups before deleting the whole thing. Twitter was invaluable until the takeover (patient experiments with blood thinning, diet, fasting, etc etc way before any doctors were interested) and then that one had to go too. Found some community in the Eureka app, but that couldn’t continue due to lack of use (possibly because a lot of folks left Twitter, where the driving force was?)