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.
Every time I meet a new provider, and sometimes throughout my course of care with them, I feel like I have to prove myself. I have to prove that I know a lot about my diagnoses. I have to prove that I am actually experiencing the pain or symptom I am there to speak to them about. I have to prove that I know my rights as a patient.
It’s almost as if I were on trial.
At the same time I wrote the email in my previous post about directions in advocacy, I was asked by a company to write a post for their blog – a new initiative to help elevate patient stories. While I was deeply flattered by the words of the person who reached out to me, I was troubled by the idea of simply saying yes. In part because I think that patient advocates have gone too long doing many things for free and in part because of issues of independence and conflicts of interest.
I wrote back to the company and started a conversation with them about what it means when they ask someone to write for their blog. I thought I’d share my email response here as again I think it speaks to issues many patient advocates face and one that needs to be addressed as the patient movement continues to mature. There needs to be an industry standard for how to ask patients to contribute and what patients get in return for their involvement. I think we need to be bluntly honest with those who ask us to contribute our stories and not agree to contributing simply because we are asked.
Here’s what I wrote:
Just before the holidays I entered into a few discussions about the directions patient advocacy is taking as what used to be a fledgling movement of sorts is now coming into more maturity. As the new year starts, I think we need to start to assess where we are as advocates as a whole and what we are trying to accomplish.
To that end, I wrote the following email to some well known diabetes advocates who I think have a large voice to talk about issues of transparency, conflicts of interest, and which voices are being heard and represented. I think these issues go well beyond the diabetes online community (#DOC) and span to all disease communities. I hope that by writing to those who are seen as leaders in the #DOC and also posting it here we can start the conversations about how to be better advocates.
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.