Healthcare system

I guess the end of the year is as good a time as any for this big, nay enormous, long overdue health (and life) update - how appropriate that this is (in Drupal-speak) "node 1000", aka. the 1000th post on this site! December just had some surprises in store for us, and I got a bit sidetracked and wanted to get this one done first.

You may not have noticed but over the past couple years, even though I've continued to write posts about health and chronic illness, most of them haven't been particularly specific to what's actually been going on with me. I've written a few posts about my throat issues and adrenal fatigue, but otherwise I've been sticking to more general conversations about the ins and outs of living with chronic illness. I wish I could tell you that this was simply because of my commitment to speaking out about chronic illness, but that would be leaving out a significant portion of the truth. The truth is harder to talk about and more complex. 

My desire to keep personal details hush hush has unfortunately really cramped my ability to write about many topics that I have a deep desire to write about. Specific health issues, work plans, personal/family relationship stuff... I've been thinking long and hard about this, and have waffled back and forth several times about it, and have finally decided that it's time I just have out with it all so I can get back to really talking about all the things I want to here.

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Now, where to begin... Maybe a recap.

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

My friend Stephanie summed up life with ongoing illness so well:

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

The day has finally arrived... 

Issue 2 of Chronically Yours is finished and for sale!

It's taken me a whole year to get this issue done... I've been kind of preoccupied, ironically, dealing with my health and wellbeing! Slowly, but surely, I've been working away at it, and after a little stapling party, it's done!

This building is part of VGH, you wouldn't know how pretty it is from the outside. Sitting there, it was hard not to notice I was the youngest person for miles around who didn't actually work there. I was there to get a second opinion on my laryngeal granuloma.

Waiting for an appointment at VGH

[EDIT: I've posted a follow up to this here.]

[EDIT: there is now a second update here.]

[EDIT: I've just posted a final update on my LPR adventures. I'm going to lock the comments on this and the other LPR posts now, as I really want people to use the LPR Facebook Group instead of posting here (or emailing me) - you'll get much better responses and support there! ]

And now time for some health catch up...

I don't know how I'd missed this, but Dr. Brian Goldman of CBC's White Coat Black Art did a TEDx talk last year, and it's wonderful. It's called: "Doctors make mistakes, can we talk about that?" (The video is at the bottom of this post if you'd like to watch it in its entirety.)

On my health pilgrimage, and as part of working on my zine, I've been tracing back through my medical history, trying to connect dots between all the possible factors that got me into this state of less-than-ideal health. I've been researching root causes of various symptoms and ailments, and how they're all intertwined. I've been thinking back to all the various extremely traumatizing interactions I've had with healthcare practitioners over the years.

One thing is crystal clear: doctors make mistakes. And some of the really good ones are starting to admit it.

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