5 Spoonie Community Blogs I Love
In this post, I share 5 blogs I’ve been following which have helped form the foundations of my spoonie community. They have given me a sense of belonging which I had longed for since I was diagnosed with Multiple Sclerosis (MS).
Being diagnosed with a chronic illness in your 20’s can sometimes be a lonely place. I would often find myself in situations where there was no one around in my age group. Therapy and support groups in my community were catered towards retirees or to people with greater support needs than myself. I had no one I could really relate to. That all changed when I started blogging and found that I wasn’t alone. I discovered that there were many others like me. Our diagnosis may have been different, but we had the same interests and the same challenges. These people became my spoonie community.
The following 5 blogs have all played a part in giving me that sense of belonging and inclusion.
“Surviving Life’s Hurdles has been created to provide some much-needed support to anyone struggling with their own personal life hurdles.” (from: survivinglifeshurdles.com)
Surviving Life’s Hurdles is one of the first blogs I began following, and it was the focus on overcoming barriers that attracted me to it. This blog stands out to me because it’s a beautiful balance of support, helpful coping strategies, story telling and crafting ideas. The inclusion of crafting, which has been weaved seamlessly into the blog, is a gentle reminder that surviving my hurdles is also about taking time for creativity and fun.
“My life: Teaching, acting and living with MS” (From: dinosaursdonkeysandms.com)
I first came across this blog when I saw a post titled “Dizzy’s Top Relaxation Techniques” in my WordPress feed, which featured an image of a cute crochet donkey. I was intrigued, so I clicked the link to find out more. I discovered that the crochet donkey in the photo was in fact Dizzy. In this post, Dizzy shared her relaxation techniques which were both helpful and fun to read along. Dizzy described in detail how she twists and balances in tree pose, and I could actually picture Dizzy twisting away. It was informative mixed with fun and whimsy, and it makes me smile every time I see dizzy pop up in my feed.
“Spoonie Living is a lifestyle blog à la Martha Stewart Living for folks with chronic illness and/or disabilities who aren’t going to let their health problems keep them from living a fantastic life.” (from: spoonieliving.com)
They say don’t judge a book by its cover, but I kind of did when I saw Spoonie living’s retro logo in my twitter feed. It reminded me of one of my favourite magazines and looked like a lot of fun. So I just had to have a closer look, and I’m so glad I did. I absolutely love this blogs positivity and humour. I connected with Spoonie Living right away. Spoonie Living is chock full of practical resources and life hacks. I would describe it as a spoonie handbook and the kind of thing I wish I had been given when I was first diagnosed with MS. It would have saved me so much time rather than trying to work things out through trial and error.
“Personal stories about the realities of MS” (from: uninterrupted.org.au)
Uninterrupted is MS Australia’s very own blog, which features stories by people with MS from around Australia. Having MS in Australia can present a unique set of difficulties. We have a problem here we call the tyranny of distance. Australia is a vast and sparsely populated country, so feeling isolated or cut off is something that a lot of Australians with MS experience, especially in rural areas. Uninterrupted eliminates the isolation that distance brings and provides connectedness and peer support from people living in communities just like mine. It’s a blog I like to visit when I want to catch up on the thoughts of other people with MS from around Australia.
“A new podcast for young people with chronic illness hosted by blogger, Natasha Lipman (from: spooniepyjamaparty.com)”
I felt it was important to include a podcast in this list, as reading can be a barrier for many reasons. I can only read for a limited time because it’s very draining, so I use audio where ever possible. So, unlike the other blogs in this list which I have been following for some time. I only discovered Spoonie Pyjama Party last week during my own pyjama day. This podcast had me hooked right from the very first episode, which was a chat with the creator of Spoonie Survival Kits. It was a delight to hear bubbly conversations about the very things I have thought hundreds of times. It was a relief and comfort to hear, and it made me feel like I wasn’t alone. I really enjoyed this podcast, it was presented in such a fun and casual way. It gave me a sense of community and belonging. This podcast is perfect for when I’ve been alone for a while and need to fill the house with the sound of some friendly banter.
Knowledge is power and sharing is caring
These were some of the blogs (and podcast) that have made me feel that I had a community of people I could relate to. My peeps, the ones I didn’t need to explain myself to. People I could be myself around and never have to apologise to for feeling unwell. And since finding them, I’ve made new connections, found new opportunities and learnt a lot of new things.
Do you have a resource or blog that gives you a sense of belonging or community? That is like a friend who understands you when you thought no one else could? Something you think others might find comforting too?
Then please feel free to share your “community” blogs, podcasts or forums in the comments section below.