Interviewed on being Bendy (aka living with HMS)

[davidgillon]

DiversifYA's interview with me on living with Hypermobility Syndrome, being disabled, and writing diverse and specifically disabled characters is now up here.

DiversifYA promotes greater diversity in Young Adult literature and is doing a bunch of interviews with people with diverse backgrounds in the hope of encouraging authors to be more diverse in their writing (and readers in their reading). This particular interview spun out of meeting up with Marieke Nijkamp, one of DiversifYA's founders, and a Vice President of We Need Diverse Books, at LonCon. Ironically we didn't work out we both have HMS until a week later, at which point she grabbed me for an interview.

Comments

[thistleingrey]

Thank you for this. I am moderately bendy, less so from the description than you, and coincidentally I've recently resigned from a commitment because I can't juggle it with the pain/fatigue. It's been hard for me to communicate the reasons for the resignation to people who respond cheerfully, "Get better soon!" Can't. :P So your link is timely as well as useful for passing along; somehow, people like anecdotes from strangers on the internet better than the inconvenient situation of a person they know.

[davidgillon]

There are a few open letters out there that are designed to introduce people to the issues of living with chronic pain, fatigue or illness. There's one here http://makearthritisstophurting.tumblr.com/post/11373610150/open-letter-from-someone-with-chronic-illness-to and another here http://www.spine-health.com/blog/open-letter-a-person-chronic-pain And I don't think either of those are the one I was looking for!

And of course there's the Spoon Theory, http://en.wikipedia.org/wiki/Spoon_theory (the original site seems to be down right now) which hopefully you've heard of, but which normies probably haven't. It's a tremendously useful coping technique for us, but it actually started as an explanation of chronic illness for those on the outside.

[thistleingrey]

Thanks very much for the links! I did know about spoon theory, but not the others.

[jesse_the_k]

I'm glad that the balance between one's own experience and the "stranger on the internet" is in your favor, for once.

Too often in my interactions that "stranger" is advising coconut milk and blueberry oil applied hourly to the base of my skull.

[thistleingrey]

:)) So true!

[jazzyjj]

I actually left a comment on the blog linked to in the post here, not sure if it has passed through moderation yet. I haven't been back there yet this morning, but will see if it's up there. Anyway, I hadn't heard of this before so thanks for the post. The interview is good reading too. My former roommate--who is now deceased--had lupus and was in pain a lot of the time. It was hard for him to bend over and pick stuff up off the floor, or to reach up and get stuff out of the cabinets.

[jazzyjj]

Well, just as I had hoped my comment passed the mod test. Thanks for other comments. I was unaware of those spelling and grammar difficulties. I also received an email from somebody yesterday, I think one of the mods of that site. They want to interview me about my interest in disability issues. I think I'll take them up on their offer, but it might have to wait a bit as I've been busy with other stuff.