Tuesday, June 29, 2010

Questions to an X-Ray Technician...

So I moved my rheumatology appointment up two weeks, because I've had really bad back pain lately. Usually it's mostly in my hip joints and lower back, but the stiffness was the the point that it was throughout my entire spine in the morning, culminating in me not being able to touch my toes or move my head around to look past my shoulder. I went in today and had about a dozen x-rays taken of my back and hips. The technician was so polite. He kept saying sorry every time he had to adjust my hips for the image. Eventually I told him it was okay, he didn't need to apologize, I'd had enough x-rays done over time I knew the drill and it was okay.

And then, as I was lying on my back looking at the muted orange pot-lights that seem to line all of these diagnostic rooms, I thought "I guess this is not everyone else reality." Which is kind of dumb that it's somehow taken me this long to realize. I think I know the x-ray set up in every hospital in central Toronto. I know which hospitals have the nicest staff at their ER's. I can tell you how long you'll likely be in an ER depending on the location and the time of day. And when I think about moving, I think about proximity to hospitals and doctors. Anyway, that's just a tangent... Back to the x-rays: I was lying on my back looking at the lights and for some reason being in a clean gown (no matter how fugly it is) and lying on clean linen and being gently proded around I suddenly thought, "I feel like a baby." And then I almost started to cry... But then I thought, "OMG, Virtue, don't you dare start crying here" and tried to imagine the uncomfortable converstation that would ensue with the very polite technician.

In the end, I got up and asked my standard x-ray technician question: Do you look at people differently after being able to see their insides all day? (It's part of this stupid experiment I have going. There's no real purpose to it, I think I figure if diabetes changes how I look at all things food related, then maybe taking x-rays does the same? I also wonder how people get their heads around seeing someone's bones, but then having them as a real person in front of them. It just seems weird to me. Don't know...)

This round's technician's response was a little different, because I think I was kind of nervous after nearly breakind down in the room... I think he thought I asked if all x-rays looked the same regardless of person? At any rate, his response (and I'm paraphrasing, of course, so take that into account) was that people pretty much look the same in x-rays, unless there is obvious trauma; just some people are bigger and some people are smaller.

I just realized, as writing this, I think he was actually a really good technician. I don't think I would have felt like I could feel emotional and present about things if I wasn't comfortable/feeling safe with my surroundings.

(I covertly took this picture for your viewing pleasure!
Apparently it is me/patient carrying an old TV with my bones in it!)

Monday, June 21, 2010

Today is National Aboriginal Day

So, since here in Canada today is National Aboriginal Day I thought I would speak a bit about diabetes in Canada's Indigenous communities. First, there are three different groups understood as 'Aboriginal' in Canada: First Nations, Inuit and Métis. I know of a lot of documents relating to statistics and understandings of wellbeing from First Nations perspectives, but there seems to be much less information regarding Inuit and Métis peoples. Contrary to the many myths purported by Hollywood and pop culture there are many different communities of First Peoples in North America. However, there are some general similarities between various First Nations perpectives of health. The most glaring difference is that while mainstream medicine sees only the physical; while First Nations understand that wellbeing includes the physical, mental, emotional and the spiritual. That's is just the surface of differences, but I think it is enough that you can see the two views, although both concerned with wellbeing, come to this understanding with very different concepts of what is worthy of focus. (If you wish to read more, I think that the First Nations Regional Longitudinal Health Survey: The People's Report has a nicely illustrated outline that goes through the differences and similarities of First Nations and Western understandings of health.)

As you can imagine, study after study illustrates that misunderstandings and racism are commonplace in Aboriginal peoples encounters with mainstream health services. I don't think it takes a genious to see that if Western medicine only considers the disease, than it is ill equipped to understand the various cultural and racial issues at play in these encounters. Take for example Catherine T. Elliott's narrative:

When I was a medical student, one of my teachers warned me to be wary of misunderstandings that could cloud my judgment. He described a case in which the powerful negative image of “drunken Indian” impaired a physician’s ability to assess and treat a man with diabetic ketoacidosis. The aboriginal patient waited in a wheelchair in the waiting room for several hours until the next physician came on shift and discovered the error.

While, she goes on to note:

In medical school, one of the first “facts” learned about Canada’s aboriginal peoples is that they have poor health status and experience substandard social and economic conditions. Many of us do not come to understand the historical and social contexts of these facts. This can lead to a sense that “being aboriginal” means having poor health and social conditions. This belief might leave us vulnerable to adopting common social stereotypes.

The practice of conflating health outcomes with cultural norms, when they are better explained by social, political, and economic factors, has a long history in Canada. It can occur when members of one group become marginalized and impoverished, and their behaviour in response to the marginalization is deemed “part of their culture.” For example, in the early 1900s when First Nations in British Columbia were separated from their land and resources, their ways of life changed from migratory to sedentary. Previously healthy living conditions became unsanitary, and high mortality rates from infectious disease ensued. The historical record suggests that First Nations themselves were blamed for their poor health, without an appreciation of the social effects of this dramatic change in way of life. Poor health was deemed “an inherent part of indigenous lifestyles.”

These last points, I think, are especially pertinent to diabetes. With colonization came the stress of displacement, genocide and residential schools (also see: Where are the children?) and a shift from traditional diets to Western foods- processed, rich in carbohydrates and fats. Diabetes, in this case, is not just an illness of the body, but also one of colonization... but is also now one of epidemic proportions in Native communities.

Consider these research findings:

"Diabetes among the non-reserve Aboriginal population was most prevalent in the North American Indian population, where 8.3% of the population age 15 and over was diagnosed with diabetes, as opposed to 6% of the Métis population and 2.3% of the Inuit population.

Rates of diabetes have risen for North American Indian adults not living on reserve since 1991 when the rate was 5.3%. Rates for the Métis and Inuit changed only slightly: 5.5% for Métis and 1.9% for Inuit adults in 1991.

According to Health Canada, there is evidence that the prevalence of diabetes is higher among the Aboriginal population living on-reserve. (Health Canada 2000) If this group were included, it is likely that the rate of diabetes for the total Aboriginal population (both those living in reserve and non-reserve areas combined) would be higher than 7%." (StatsCan)

More recent statistics note the prevalence of diabetes in First Nations adults is closer to 14.5%. While "among First Nations adults with diabetes, 78.2% have Type 2 diabetes, 9.9% have Type 1 diabetes and 9.8% are in the pre-diabetic stage." (RHS: The People's Report)
The average age of First Nations youth diagnosed with Type 2 diabetes is now 11 years. (RHS: The People's Report)

In research conducted between 1980-2005: "The prevalence of diabetes increased over the study period from 9.5% to 20.3% among First Nations women and from 4.9% to 16.0% among First Nations men. Among non-First Nations people, the prevalence increased from 2.0% to 5.5% among women and from 2.0% to 6.2% among men. By 2005, almost 50% of First Nations women and more than 40% of First Nations men aged 60 or older had diabetes, compared with less than 25% of non-First Nations men and less than 20% of non-First Nations women aged 80 or older." (Dyck, Osgood, Lin, Gao, & Stang in Canadian Medical Association Journal)
"In addition to high rates, according to Health Canada, diabetes is a significant concern for the Aboriginal population because of 'early onset, greater severity at diagnosis, high rates of complications, lack of accessible services, increasing trends, and increasing prevalence of risk factors for a population already at risk.' (Health Canada 2000)." (StatsCan)

Below, I have embedded a National Film Board of Canada short-film by Brion Whitford, an Ojibway man living with Type 2 diabetes. The piece follows Brion as he learns to deal with his diabetes by learning about his heritage. For various reasons, the film is sometimes hard to watch, but I think the lessons described and put forth are quite honest and touching.

(PLEASE NOTE: some of the scenes can be difficult to watch, especially if you or a loved one has diabetes and/or experienced colonial traumas. The film starts with Brion losing kidney function and having problems with circulation, in addition to struggling to find balance and health with diabetes. Also, there is one discussion where a man talks about losing his mother to diabetes and it is somewhat graphic... Just thought I should mention...)

Finally, I realize that in discussing illness there is a tendency to focus on deficit. I think it is important to remind people that (like all groups) while there are negatives there co-exists many positive facets to Native American communities. To this end, I would like finish here by sharing this most recent post by Adrienne over at (one of my favourite blogs!) Native Appropriations: Between Pageantry and Poverty: Representing Ourselves

Monday, June 7, 2010

Right so...

Today's been a tough day. I don't know how to explain it proper. And maybe I feel partially awkward about it, because I feel awkward talking about my thesis... Because, well, my thesis is about my experiences with blogging about diabetes. It maybe doesn't sound that novel here, but social work seems to be all kinds of out of touch with technology. I find a lot of the literature that I've read is very quick to discuss general problems in social media (like privacy), but not so good at discussing specific issues with specific applications (practical recommendations to discuss with service-users) and really rather bad at checking out a lot of the potential benefits. To be honest, most of the articles seem like the authors don't even use the tools they are describing... Anyway, I wanted to talk about all the issues and the good things that blogging and social networking can be for people with a chronic illness like diabetes.

So, I went to talk to my thesis advisor and something rather unexpected happen: she asked me what to pin-point what blogging has done for me... which caught me off-guard... and I kind of stumbled a bit... and blurted out... "it's been a mourning process." Oops? I started to cry and tried to explain: before I found people like me online I knew no one. I was all alone in diabetes and the only talk that occured around it was medical speak. So, I only ever considered it in medical terms and that made it a very cerebral kind of experience. It wasn't until I started connecting with other people that it became emotional. And, it wasn't until it became emotional that I realized my body's broken and it's never getting better.

The one and only time I can remember thinking that I really needed to connect with people (preferably my age) with diabetes was a few years after I'd been diagnosed. I remember calling the Canadian Diabetes Association asking if they had support groups for people with type 1 diabetes. The guy on the other end said that there was nothing (in the entire effing city of Toronto!) I felt a bit teary and I remember his demeanor changed from sounding more professional and formal to seeing if I needed to talk to someone right away for support. I don't know who he would have sent me to talk to, because as far as I could tell there was nothing. I ended up making like it wasn't a big deal- that I was fine, but was just checking things out. After that I grew up pretending like diabetes wasn't that big of a deal. I just talked about it matter of fact. When people had issues with needles and blood, I quietly went elsewhere to do my testing and take my shots. I didn't complain about it. I didn't talk about any of it. I just did it. Nobody ever questioned it, and I don't really blame them: I did such a good job at pretending, I even had myself convinced that it was all fine.

Anyway, I'm feeling it now. I don't think that's a bad thing. I think it's an about time thing, actually. I still find it kind of curious though that in modern medicine it somehow only counts if your body is working well; while most times it seems like no one checks to see that your psyche is also getting what it needs to be well and thrive.

(I'm mostly okay with the broken thing, btw... I'm really not digging the forever and ever part though. Yeah, I mostly feel sad about the forever and ever.)

Saturday, June 5, 2010

Sometimes I feel like I'm on a different planet...

I was in a coffee shop reading for school. I was reading an article about patients writing illness narratives. It was arguing that such stories can be seen as a political act against a biomedical model that sees patient merely as disease and not as an whole being. I have issues with some of what the authors argue. I don't really see one nice neat narrative in illness. It's more like different stories of good days and bad days and, while, there might be a beginning, for people with chronic illness there is no end, or at least not in life.

When I got toward the end of paper I started to tear up... which was kind of weird, because I still wasn't into the article. By the end it argues that nurses are in a position to dialogue with patients and create a sort of co-constructed narrative of illness that suits both the practictioner and the patient. Fair enough, I guess, but I just didn't find it incredibly mindblowing. So, I couldn't really figure out why I was suddenly all choked up...

And then I realized that this was playing in the background:

How did we stop listening and seeing one another to the point that we have to write hundreds, if not thousands or millions of pages about love and care? And only to be one-upped by a simple love song playing in the background of a coffee shop?

Quite very simply: I just need you to stand
with me-- not ask me inane questions about my medical devices or condition for your own purpose or judge me or tell me I'm not trying hard enough... Just stand by me.

Coincidentally, I came home to find this on my facebook feed: