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.
I have the grand misfortune of having 3 of the most stigmatized diseases – type 1 diabetes, celiac disease, and borderline personality disorder – and I would like the public to stop making it worse.
I never really know what to say to people when they ask what I’m doing for the holidays. I want to say – “I stopped celebrating holidays years ago when I realized they’d only bring pain.” Too many years I was hurt. This year too many are hurting.
Today I ran into my old figure skating coach. She was my first coach some 24 years ago and while it was a delight to see her, it was also incredibly awkward. The thing is, whether I’m running into an old acquaintance or meeting new people, I’m never quite sure what to say.
After writing a blog post on the need to inform others when I am having a panic attack, I did go back and make a few of my own cards. When Nikki Seefeldt over at I Live & Breath reposted the blog on her site, I was reminded that I wanted to share my solution. I’m posting the cards here so you can get an idea of what worked for me end hope that others will feel free to use them or adapt them to fit their needs.
I will note that some individuals suggested that I include more information like a website address. However, given that these are to be used in emergencies, I felt that the simpler the better and that the person helping will not have time to go to and search a website for helpful information while I’m having a panic attack. Others may find that they want more or less information for their cards. But I encourage anyone making their own cards to focus on only including the minimum necessary information to get the help you need in that moment.
You may save these images from my site or feel free to contact me via the comments below or on Twitter @GilmerHealthLaw and I can send you the files I worked on. They are designed to fit the size of a business card.
I only ask that you do not use these to make a profit for yourself or any other organization. I would like to keep these free and accessible to the community.