Diane Murray lives with chronic illness and pain. As soon as her condition appeared (which is as not yet definitively diagnosed, as she will discuss), she joined the chronic illness online community and started creating resources to help others. Diane is the author of Spoonie Living, a lifestyle blog for people with chronic illness, and Chronically Badass: Chronically Badass: A Guide for the Young & Chronically Ill. We spoke to her about her work and background.
Diane with a friend’s dog that she borrowed on a tough day. (Photo credit: Charlie Zevon)
HealthCentral (HC): Please tell us a little about yourself._Diane: _I live in Portland, Oregon with two of my partners (I’m polyamorous) and four cats (we have no sense of proportion). I became sick in my early 20s and had to leave full-time work to manage my health. Right now, I’m focusing on a freelance career as well as maintaining my chronic illness and disability lifestyle blog, Spoonie Living.
I have some kind of connective tissue disorder that’s still manifesting, but I’m guessing it will end up diagnosed as Ehlers-Danlos Syndrome (Hypermobile Type). I’ve also got the usual comorbid profile, including Postural Orthostatic Tachycardia Syndrome, chronic pain, anxiety/depression, and plenty of trauma related to navigating the medical, disability, and insurance systems.
My other loves include comics, intersectional feminism, gender and sexuality, communication, and, well… lots more nerdery that’d take entirely too much space to list.
HC: You are the person behind Spoonie Living. What do you focus on and how did you get started?_Diane: _My focus is taking all the decentralized (and often specialized) resources for folks with chronic illness and disability, and getting them all into one easy-to-navigate space.
I got started when I joined the online chronic illness community. It was (and still is) so difficult to find decent resources in between the personal posts and chronic illness memes, and there didn’t seem to be any sort of single authoritative presence to go to when you needed information. I’m the kind of person who sees a vacuum and heads right in there to fix it, so of course I had to create a blog!
HC: What inspired you to write** Chronically Badass: A Guide for the Young & Chronically Ill**?_Diane:My own experience becoming ill. It took a lot of time and reading to really build a framework for what I was going through and to position myself within the community and the world. After all that, I found myself wishing there were some kind of “sick-kid welcome wagon” that could help provide that framework to others and get them connected with important information — something to give them a nice jump-start. As with my blog, I saw the void and got to work.HC: You have a philosophy of making your resources available for free. Why is that?** Diane:** _I’m a big open-source nerd — I’ve always loved the idea of just putting your work out into the universe to be useful to others. I knew I was writing for a demographic that is pretty darn strapped for cash, and I couldn’t help everyone the way I wanted to by putting up a paywall on my work.
HC: What’s next for you?_Diane: _Too many things! The bottleneck of creativity and chronic illness is real, and I’ve had to really pick and choose what gets my attention first. On my radar now: some original content I’ve been wanting to write for the blog, a physicianship and chronic illness training module (with corresponding zine) for medical students, a few more zines that go deeper into topics of the chronic illness life, and a separate blog to post risk-aware, harm-reduction information for those who need to DIY their medical care.
Lene’s new book is Chronic Christmas: Surviving the Holidays with a Chronic Illness. She’s also the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, 7 Facets: A Meditation on Pain, and the award-winning blog The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.