This week, the current president released his budget plan which included deep cuts in many of the programs that make our country great and that keep people alive. Programs from meals on wheels to the Environmental Protection Agency to the National Institutes for Health among many others are threatened under this budget proposal in a way and to an extent they haven’t been before. In some ways this move is not surprising to me as it continues a deep narrative about a person’s value and worth, particularly when they have very little – or rather a person’s lack of worth. A narrative that blames and shames individuals based on stigmatizing assumptions about who people are – particularly the assumption that when someone has little, when they are poor it is a character flaw, they are merely lazy or uneducated.
This week was National Eating Disorders Awareness Week and so I thought it would be a perfect time to share my “Diabulimia Primer.” This is a document that I’ve crafted using the research on eating disorders in people with type 1 diabetes. I take it to every doctors appointment (even endocrinologists) to explain what this eating disorder is all about.
I first developed it because no provider I knew understood the disorder. So when they saw my extremely high blood sugars, instead of taking the time to understand what was behind them, they would judge me, threaten me, and give me lectures about how I would lose my limbs and die. Many didn’t believe me that insulin can cause weight gain and others still mistook me for someone with type 2 and would tell me I needed to lose weight. That only made things worse.
In time I’ve found more and more providers have at least heard of the concept but they don’t have a great grasp on what it means or how and why it develops. The document cites research because I know doctors won’t accept my word for it. And once they’ve read this primer, they often come to a new understanding and are able to better help me with my treatment.
Recently, the diabetes online community has been in a bit of an uproar over United Healthcare’s decision to name the Medtronic insulin pump as the preferred pump for all on its plan. #MyPumpMyChoice and #DiabetesAccessMatters are added to every tweet on the issue as people debate choice in health care, health care costs, and access to healthcare in general (though mostly around tech – i.e. insulin pumps).
For some time now I have been rather frustrated with the larger issues of access, the ones that don’t get talked about as much and don’t have popular hashtags, the ones that aren’t sexy but are often more critical. And those include basics like access to dental care and eye care and mental health care – (and I know this will piss many off) but what I think are the real access issues.
When you break a jar of hope it may seem like a rather small thing. It may seem like no big deal, just a jar with words inside. But when you break a jar of hope, you break a piece of my heart.
I started making “Jars of Hope” in 2011 when I worked for a nonprofit. We would give them to cancer patients receiving treatment to help inspire them through their very difficult journeys. And I thought that it was the perfect idea to expand to patients and caregivers wherever they may be – for we all need inspiration, especially on the hard days.
Stores are failing at providing gluten free items all over the country. It’s so frustrating for those of us with celiac disease – for whom gluten free is NOT a fad. I don’t know why it’s so hard for them to get it right – but I think it’s because they’ve never actually asked someone with celiac disease what they want/need. (In other words, designing for patients without patients aka end users.)
My second real job was working as a cashier at Nordstrom in the Women’s Shoe department (my first job as a sales associate at a small children’s bookstore – Sunnybooks for Kids). At orientation, Nordstrom taught us a few things that have stuck with me throughout my life since – people are generally telling the truth, customer service is paramount, and treat everyone with dignity. Lessons that should be applied to healthcare (and life).