Over the last couple months I've had two really wonderful opportunities to participate in some advocacy projects for chronic illness and disability. One is a written/photographed interview for As We Are, and the other an audio interview for In Sickness + In health. I wanted to document them here for posterity, and to share both of these amazing projects. They go beyond looking at the illness itself, and dig deep into what it's like to live with chronic illness and disability in a world that often wants to sweep people like me under the rug.

As We Are

Ariane in purple dressBack in September a mutual friend put me in touch with an amazing young woman, Zoya Jiwa who has started a project called As We Are: style strategies to navigate health conditions. Zoya is a university student who has been living with chronic illness since she was a teenager, and started this project as a way to talk about how style and fashion can be supportive tools when living with disability, and chronic and/or mental illness. She's also been kicking major advocacy butt - she just did a TEDx talk at my alma mater, Simon Fraser University, won the university's Terry Fox award for community engagement, and was named one of this year's Fellows for both RADIUS and The Next Big Thing Foundation! You can tell she's a passionate advocate for both herself and the larger chronic illness community.

(Photo by Zoya Jiwa)

This weekend, I saw this video on Facebook, poking some fun at how uneducated many Canadians are on basics of politics and the upcoming election on October 19th. Pretty funny - that is, if you do know about these topics. Haha, ignorance! Or is it...? Friends, mocking doesn't actually solve the problem of lack of understanding of the political system - because it's not really that funny when you think about it. Someone who doesn't know the basics about the parties and what they stand for may either A) vote for a party without understanding what they stand for, or B) not vote. Making fun of people who aren't into politics sure isn't going to help the situation, what might is if those of us who are can take a little time to try and help shed some light on the topic!

I've been following politics for most of my life, and took one politics class in university. There are way more knowledgeable people out there than me, but I feel lucky that I have a relatively good grasp on what's going on. And I actually enjoy learning about it! But I can only imagine that if I had ignored politics all this time, it would be horribly overwhelming to suddenly try to make sense of it all, and make an important decision - who to vote for! We have some terrible voting rates in this country, so what better way to encourage voting than trying to help those who are curious get a quick idea of what's going on? (Hint: it's not making fun of them.)

This is a post I've been meaning to write for so long, and putting off until I could fully do it justice, but I'm realizing that maybe it's better if I just actually publish it rather than keep waiting until it's perfect. I don't have the best cognitive powers today since I'm not feeling well, but as I head into a week I know will be very physically and emotionally challenging, this is at the front of my mind and I wanted to get it out there. 

This is very much written about hetero/cis couples and might not fit with the dynamic in relationships that don't fit that label. Or maybe they might. I'm writing about my own experience and some that I've observed, and will be using that language, but I would love to hear from people who have stories that do or don't fit with that in comments!

Hi friends, long time no write!

Let's face it, I'm woefully behind on blog posts. This is for two reasons: 1) my hands are killing me thanks to some kind of mystery arthritis that none of my doctors are too concerned about, despite its significantly affecting my ability to type, cut food, etc., funtimes always. And 2) I have such a backlog of posts going I barely know where to begin! The first I can't seem to do much about right now, but the second I can - so let's get to it!

Firstly, that 4th post in my "A calmer mind" series (that is so long ago you've all forgotten about it by now), well...that isn't going to happen. Moving on! Secondly, it's long past time I pull together the results of healthcare experiences survey. That's what I'm gonna do right now so I can share it with you, and move on to hopefully posting some more frequent but shorter (and thus hand-friendly!) blog posts again. 

Thank you so much to everyone who completed the survey. I was amazed at the response it got, and was surprised by some of the answers and the ways they did and didn't match up with my own experiences. Please note the responses were completely anonymous and did not contain any identifying information (such as names, email, etc.), though I have my suspicions about a couple of them being friends of mine I did not ask/confirm whether they were. I also did not ask for people to submit info about their specific health conditions, as I wanted to focus more on their healthcare/practitioner experiences than their specific diagnoses.

I've been putting off writing an update for so long that I barely know where to begin. This will necessarily be rife with omissions... And just FYI I finally crunched the data on the healthcare experiences survey I had posted (it's now closed to new entries). Thanks so much to everyone who responded! I had some interesting results and am looking forward to sharing them soon! 

It's been a weird summer - things have been pretty apocalyptic. Plagues (bad chronic illness flares for me, plus Bruno and I both had a bad cold/flu virus a few weeks ago - fevers and snot galore), locusts (we keep getting explosions of maggots in our compost bin because of the heat, and they got into our garage), crazy weather (namely the incessant heatwave, though we've finally got a little break from that, but also the couple days of thick forest fire smoke)... It's been one thing after another.

Anyway, let's get to it.

You've got what it takes and it will take everything you've got

I have SO much to update you all on, but I'm still working through how/what to tell you... But in the meantime, I've had some more pretty awful experiences lately with doctors, and it led me to wanting to hear more from all of you about your experiences. So I put together this anonymous survey, and I really hope you'll fill it in and share it with any of your friends who are chronically ill, mentally ill, or disabled.

Thanks folks!

Update: The survey is now closed, thanks to all who responded!

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