Diabetes Blog Week: Day Two – CO$T

So, today in #dblogweek, we talk dolla dolla bills ya’ll. Just a forewarning…

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Below is the prompt:

Click here for the The Cost of a Chronic Illness – Tuesday 5/16 Link List – Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)


My Response:     (… warning rant coming) 

Last September, when I turned the lovely age of 26, my insurance changed.  My new insurance covers about 80% of all durable medical equipment. There is no deductible, and no co-pay. I just have to pay 20% of whatever I need. Seems reasonable.

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After nearly ten years of pumping, I was forced back to multiple daily injections (MDI) because my income wouldn’t allow for that 20%. So here I am, about eight months later, still royally pissed about it all. I’m not upset that I have to use MDI. I’m doing really well with it, best management in a while actually.

What I am upset about is the fact that my insurance is allowed to dictate what treatment and therapies I use by covering the cheaper options at a higher rate. I’m infuriated by the fact that our healthcare system prioritizes their bottom-line above my health.

In the past, I’ve argued the case that all chronic illness = disability –> because of the cost. In the US we are made to pay for the care and supplies we need to survive. The lives of those with more resources are seen as more valuable than are those without. This is undeniable if you just look at the rhetoric we use to talk about healthcare.

We talk about freedom – freedom to choose what kind of healthcare you want. Freedom to not help pay for your fellow citizen health, because what’s it to you anyway? Here’s the problem: We have a fundamental and systemic attribution error occurring EVERYWHERE. When a poor person relies on medicaid for insurance, we assume they are lazy free-riders. That is, we attribute their use of government funds to their character, or lack thereof. However, when we get fired and are forced to rely on government assistance to make up the income, we attribute our own use of it to circumstance.

At a systems level, people with chronic illness are punished through forced expenditure. My body doesn’t meet the norm. It requires more. So, I am automatically and forcibly entered into a market, in which those who do  meet the norm will never need to “choose.”

So, my “freedom” as a chronically ill person, is to choose between a therapy that costs me $500/month out of pocket, and a therapy that costs me $200/month.

It doesn’t feel like much of a choice at all. It doesn’t feel like freedom.

It feels like discrimination and deception.

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Diabetes Blog Week: Illness Imagined

giphyWell, it is day four of Diabetes Blog Week and the topic today is about our experiences with
healthcare. In this post, I shift the focus a bit to an ideological issue I see as pervasive in the medical community. It has to do with imagined hardship.

Last year, while working as a bartender, a woman pointed to the tattoo on my arm that reads “DIABETIC” and asked, “are you diabetic?” I responded, “yes, I have diabetes.”  It was a slow day at the bar, so I entertained her string of run-of-the-mill diabetes questions.

No, diabetes is not as dichotomous as you would think. No, cinnamon does not reverse it, nor is there a cure.  Yes, I do take multiple daily injections and prick my finger many times a day.  And finally, yes, it could be worse.

Then, the woman offered me credit for my medical efforts, “Uh, I cannot imagine,” with the usual doom-and-gloom tone.

To me, her words translated to, “Your life must be awful.” I went home and reconsidered the disease-acceptance I had built up since the last conversation like this, about a month before. Even a little suggestion that the way I live is far from ideal is a reminder that others would not opt for my life circumstances. “No one would want this” is the thought I am left coping with.

There is a researcher named Peter Ubel who, along with colleagues, compared the way non-sick and able-bodied people expect to feel at the onset of a diagnosis, and the way sick and disabled people actually feel post-diagnosis. Ubel’s findings suggest that non-sick and able-bodied people are poor assessors of quality of life given medical complications mainly because they fail to incorporate adaptability into imagined scenarios.

Individuals like the woman I interacted with, can be narrowly focused on the potential pain of shots or the inconvenience of monitoring blood sugar. These individuals might play out one or two scenarios in which the mentioned diagnosis would limit a freedom they value. As Ubel mentions, the notion of adaptability is absent in the snap judgement used to decide the desirability of a particular lifestyle.

When we form an idea of what life would be like given X circumstances, we miss something. Malcolm Gladwell, in Blink: The Power of Thinking Without Thinking says, “We have, as human beings, a storytelling problem. We’re a bit too quick to come up with explanations for things we don’t really have an explanation for.”

In the context of today’s topic, I draw attention to the fact that among the individuals who overestimate the decline in quality of life given a new diagnosis, who underestimate adaptability, who form incomplete explanations based on limited information, are doctors.

Healthcare providers are not immune to faulty expectations. The trouble we face as a result of faulty expectations are the subsequent treatment options provided.

In my own healthcare experience, I’ve been denied CGM coverage because my management wasn’t ‘good enough.’ I have also been denied disability status because my doctor didn’t see diabetes as a disabling disease (put another way, my illness wasn’t ‘bad enough’).

My biggest frustration with our healthcare system is that the person with the least decision-making power is me, the patient.

I believe this stems, in part, from a system that elevates the physician’s, the payer’s, the industry’s perspective over mine. It stems from a system that values my life less because of diabetes.

Source: Ubel, P., Schwarz, N., Loewenstein, G., & Smith, D. (2005). Misimagining the unimaginable: The disability paradox and health care decision making. Health Psychology, 24(4), S57-S62.


Click for the The Healthcare Experience – Thursday 5/19 Link List.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Diabetes Blog Week: Tuesday Take-Away

 

Welcome to Day 2 of Diabetes Blog Week. The topic revolves around the mental and emotional aspects of living with diabetes and what each of us bloggers does to cope with the stresses diabetes brings.  The coping mechanism that suits me best as I move through the trials of diabetes is curiosity. Becoming a researcher in diabetes isn’t a selfless one. When I am working on untangling the intricacies and complexities of diabetes, I am happier. I am steeped in project and connection when I am interviewing, coding, reading, and learning. xt9dpldjhzzktonen6

For example, learning that there ARE researchers who are proposing the application of complexity theory to diabetes clinical practice thrills me! What thrills me more is knowing that I bring some of our perspective to this growing body of research.

All of this researching helps me cope personally, but it also boosts my pride in our community. As we dig deep and write about our experiences, researchers are fumbling to explain it in academic terms. It makes me want to send each and every one of you GIANT virtual hugs all the time for being so wonderfully in tune with your mind, spirit, and body.

If I were to suggest anything to a PWD experiencing burnout, it would be this…

“Never let a good crisis go to waste.”

As hard as it is to write during burnout, let us try. Because our stories ARE data, our words are future findings. Knowing that the power of our hardships can be collected and explored is extraordinary. I don’t know about you, but that’s enough to keep me going.

If you want to look up the complexity theory in diabetes practice, here is a good place to start: Cooper, H. C., & Geyer, R. (2009). What can complexity do for diabetes management? Linking theory to practice. Journal of evaluation in clinical practice, 15(4), 761-765.


Today’s Topic: Click for the The Other Half of Diabetes – Tuesday 5/17 Link List.
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Diabetes Blog Week: Message Monday

I am beyond thrilled to have started The Chronic Scholar blog in time for the Seventh Annual Diabetes Blog week! Karen over at Bitter-Sweet Diabetes is such a gem in our community and I am so thankful for her work here.

Today’s topic was my suggestion. I wrote this suggestion under the impression that our sense of community may be strengthened by it. Our collective sentiments are representative of our community, and possibly people with diabetes in general. How often do we look at and examine our message though? How often do we analyze the effectiveness, possible results, and second-order consequences of the sentiments we articulate through our stories? I personally wanted to opportunity and space to explore my main diabetes messages, so I am extra thankful to Karen for picking this topic.

I haven’t been the first PWD to admit today that my message has changed over the course of writing a blog. I started it when I was working in the Bay Area at The Diabetes Hands Foundation and am now with DiabetesSisters and a second-year PhD student in Disability Studies in Chicago. I’m thankful for blogging, in retrospect, because it shows my changes over time. I get to read how I was feeling four years ago. What a wonderful opportunity.

With that said, what are the messages I put out into the world via my blog, and what do I hope they accomplish? Well, below are my top two messages. Both stem from personal experience, the latter from my studies in critical theory, and they speak to one another.

Message 1: Diabetes looks like everyone you have ever met, no matter the type, no matter the circumstance.

Can type 1 look like a child? Yes. Can it also look like a grandparent? Yes.  Can type 2 look like a child? Yes. Can it also look like a grandparent? Yes. And everywhere in between. Diabetes does not discriminate, nor does it choose its vessels based on ‘lifestyle.’ The most important message I want to spread by telling personal stories is that diabetes is more complex than the one-dimensional caricature blasted through popular media.

Message 2: When persons with type 1 set themselves apart from type 2 by saying things like “Type 1 means I did nothing to cause this,” we are inevitably strengthening the type 2 stereotype we are attempting to distance ourselves from to begin with.

This is a tricky message to share and to explain. It is complicated and has a couple of moving parts. Moreover, this second message is a reflection of how my messages have changed over time. When I began blogging, I wanted the world to know about type 1. I wanted my friends and family to know that what I endured everyday was more difficult than Wilfred Brimley made it sound. I wanted Ellen to tell the internet and Hollywood to stop confusing my disease with someone else’s.

It was with great humility that I began to witness the second-order consequences of my message and mission to educate. By demanding there is a difference, I reinforce that difference; I authorize it. In this scenario, I, as the educated patient give permission to those being educated to continue believing that type 2 looks they way they think it does, fat and old, bad and sad.

Simply separating myself and my diabetes from THAT type 2 diabetes, I do nothing to fight stigma, but in fact reinforce it.

The message which I stand by now has been my hardest diabetes lesson thus far. As I continue to move through life with this disease, with this plastic pancreas hooked at the side of my jeans, I will be watchful of the impact of my messages. I will allow for humility to guide me, espicially when my righteousness is called into question by doing so.

 


Today’s topic:  Click for the Message Monday – Monday 5/16 Link List.
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)