When you’re looking for a community to help you find your way through chronic illness, your requirements might be different to mine. Some readers look for a focus on fitness or faith to help them cope, others focus on a desire for product reviews, and some look for particular survival mechanisms like beauty or travel. Personally, I like to focus on a cocktail of coping strategies combined with ‘normal’ living – with a drop of sarcasm for good measure.
If my vibe is your vibe and you’re looking for a similar kind of community to help you navigate this chronic illness minefield, then look no further. Below are links to some of my favourite bloggers, tweeters, and instagrammers – plus a few health forums that you may like to explore.
My top blogs
They say don’t judge a book by it’s cover but who are they kidding? My impatient, judgemental attitude is that if I don’t like the look, I won’t go any further. Harsh? Maybe. Unfair? Perhaps. But if I’m searching through hundreds of blogs and forums looking for help and a home page attacks my eyes, then I rarely get as far as the words. However, if the design is great and the content matches up, then you can bet your life I’ll remember you. Here are some of my favourites:
- A Chronic Voice not only publishes wonderful content, but it’s absolutely beautifully designed. Sheryl writes her own posts regularly, but also shares well-written posts from across the chronic illness network on her Twitter page.
- Damsel in a Dress is a brilliant, sweary, funny blog written by twenty-something Lisa and I love her. She’s witty and tells it like it is… two essential criteria for surviving chronic pain.
- February Stars is one of the first blogs I discovered when I got fibromyalgia. Donna has recently received an official Lyme disease diagnosis and her blog is a brilliantly factual, pragmatic to handling complicated invisible illnesses.
- Miss Treated is incredibly unique and absolutely essential reading. The blog exists to fight misogyny in the medical profession, citing examples of women who are mistreated when fighting for fair consultation and treatment.
Some of my top tweeters are also my favourite bloggers, whilst others are just solely summing up life with a chronic illness in 140 characters. (They’re the people I envy most – I struggle to be witty/intelligent/informative in 140 characters or less. Or at all, some days!)
@MSorsomething – The twitter account for Damsel in a Dress where the wit continues.
@AChVoice – Personal tweets, plus retweets from many other accounts. This is a great way of seeing a selection of really good blogs.
@vivatramp – I love that Bee’s twitter bio is writer and poet first, disability second.
@HurtBlogger – Britt’s all famous and that. In the world of rheumatoid arthritis she’s the one to watch.
@CaitLomas – Caitlin is a woman after my own heart. She suffers from chronic illness, but she’s also a TV junkie. What an excellent combo.
@brainstorm83 – A great tweeter on life with chronic migraine.
@sixhips – Anna’s twitter bio says it all: “Rewriting the rules of what’s possible with rheumatoid arthritis, hip replacements (x6), & pericarditis.” If you’re an active spoonie – or you want to be – then Anna is inspiring with a very giant capital “I”.
It’s not just individuals that are worth following on Twitter; there are also a number of collection accounts that provide links to a wide number of blogs and articles. Four of my favourites are:
@fibromyalgiaME bio says: “Life doesn’t have to be over when you are chronically ill, you just have to reinvent yourself and what you do.” I’m all about this.
@ChronicBlogs is the Twitter account for the Chronic Illness Bloggers network, of which I am a member and a big fan. They retweet blog posts from across the network.
@BloggingBed is a support account for chronic illness bloggers and, like the above, they share links to all kinds of blogs and articles relating to pain and fatigue.
Chronic illness sufferers on Instagram often post of lot of memes, a lot of quotes and a lot of purple. I personally prefer real ‘grammers that show me a gallery of happiness mixed with coping strategies. You’ll get just that from:
- Chronic Pain Couple – I’m fairly new to this account, but I love it. It’s real, and it’s pretty. That’s really all I’m looking for from Instagram.
- Hope in Pain – Elizabeth’s account is quite similar to my own – real pictures of real life. She’s an upbeat chronic pain sufferer who became a parent for the first time last year. I love the way she documents her journey.
- Six Hips and Counting – Anna is the account you need if you’re looking for someone to inspire you, to show you life isn’t over. Anna has had six hip operations and she’s a rheumatoid arthritis patient advocate – and a damn good one at that. Her account is full of fitness, with a dose of the tired reality that is chronic illness.
- Chronically Twenty Something – There’s something about this account I really like. It’s not trying to be perfectly airbrushed or inspiring for others – it’s just an honest reflection of life with chronic pain. I really like it.
- Honest Munchies – I’m fairly new to this account, which is full of healthy food for a pain free diet. I haven’t tried it but the pictures look delicious.
- Sas Petherick – Sas doesn’t post about chronic illness, but her account is stunning and great for anyone looking for motivation or struggling with self-doubt.
Chronic Illness Communities
If you’re looking for something a bit more two-way and would like an opportunity to get involved and really debate the issues of chronic illness, then an online forum might be the thing for you. The sites below post articles from bloggers (keep your eyes peeled and you’ll see I feature on a couple of them!) but also offer chat forums so you can start discussions with fellow patients.
- New Life Outlook – they also host the Twitter chat @FibroChat
- The Mighty
- Pro Health
- Patient Empowerment Network – they also host the Twitter chat @PatientChat.
If Facebook is your preferred social media of choice, then these are my top three accounts to follow.
- Fed up with Fatigue – Donna is the most up to date and informed blogger I know when it comes to developments in the chronic illness community.
- Fibromyalgia Living Today – A collection of bloggers feature on this site, and there is a large, chatty community who frequently engage in the comment section.
- Chronic Illness Bloggers Network – This page shares blog posts from across the chronic illness community.
- FibroMyJourney – I only became aware of this page when they shared this post! But it’s a great collection of blog posts and articles focused on fibromyalgia.
- Chronic Pain Info – Does exactly what it says on the tin!
‘Community’ image via Edward Peake School.