There are some amazing communities for people with chronic illnesses out there on the world wide web, but sometimes they can be a little difficult to find and, if you have social anxiety like me, become a part of. They offer support, friendship and simply people to talk to who know what you are going through. For someone cut off from most people in day to day life they can be one of the only things we have to lean on and pull us through the bad times. I thought I would do a post about some of my favourite communities and a good place to start in each of them. And if you have any tips or other places you’d like to share please do. I spend most of my life online and i’m always looking for other places to frequent.
The most recent spoonie community I’ve started to become involved with is on twitter. The first time I signed up for twitter it felt a bit like I was talking to myself or shouting into the void. I use to think what community? How is this suppose to work? But a few months ago I tried again, I’m not saying I’m a twitter aficionado or anything but it’d definitely going a little better this time around. The thing that has really helped me feel a part of the community this time are twitter chats. These are hosted by certain users at a certain time using a certain hashtag. There are questions you can answer to guide the conversation but as the name suggests they’re just informal chats that can help you connect with others and anyone can join in. I recommend #spooniechat, and #spooniespeak. If you type them into twitter you should come up with more info for both but they are mostly weekly chats (sometimes they aren’t hosted for health reason). There are others out there I’m sure, there are a lot of blogger chats as well but I don’t feel like my blog fits into any specific ones of these. If you have any that you like please recommend them.
I love to browse Tumblr on my mobile when I’m having a bad day and I’m not up to doing anything. It’s a great distraction (as is pinterest!) but it also has a great community too. I have to say I’ve found Tumblr more difficult to communicate with others on as it isn’t built very well for conversations (and I’m not the most forward of people so this also makes it difficult) but if you are on Tumblr and looking for some where to start with the spoonie community there then I recommend looking up a user called spooniestrong. She posts a lot of helpful info and messages from others spoonies as well as hosting spooniestrong selfie saturday, which is for anyone with chronic illnesses to either post a selfie to her page or post to your own and tag it with those words to be reblogged. It’s a great way to see that there’s loads of us out there and we’re definitely not alone.
The first community that I ever signed up for after getting sick was Foggy Friends. It’s a forum for people with ME/CFS and Fibro, though many people have other conditions on top of these. I can honestly say that I have met some of the best friends I have ever had here. And having somewhere to talk to people to ask questions and look for help but also just to have a chat to about non-illness related stuff without having to explain yourself is amazing. I don’t know what I would have done without it. There was a period of my life that I was on there chatting to people for a couple hours every night.
I hope someone might find this useful as I know I always find it very daunting trying to get involved in new places online. If you have any more suggestions of other great places or tips for getting involved online I would love to hear them.