Diabulimia Primer

March 3, 2017

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.

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Proving Myself

February 14, 2017

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.

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Stigmatized

December 14, 2016

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.

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I’m Giving Up on Patient Portals

August 18, 2016

I’m giving up on patient portals.

I asked my doctors to deactivate my accounts and I’m sticking to email.

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Have you considered?

June 8, 2016

Three doctors have now fired me following the message I sent to all my providers.  I honestly am not completely surprised though I am deeply disappointed. I think that we can do better than this in healthcare.  I think patients deserve better.

However, I’m not sure that the doctors I’ve written understand how I came to the decision to write them all as I have been asked “have you considered…?” on more than one occasion. And the answer each time I’ve been asked is, yes. Yes I did consider a number of things before pressing send.

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Is this how you will teach our future doctors?

June 6, 2016

Dear Doctors,

I am rather disappointed to receive your letter requesting that I select another physician dated June 3, 2016. (see below)

I sent a letter to all of my providers, carefully choosing my words so as not to offend and to encourage my providers to work with me and with each other to provide better care. Unfortunately that letter was met with defensiveness. Providers bucked at the idea that a patient could be so empowered and engaged as to write a letter questioning the system, find a way to communicate with her providers in an unconventional and yet legally approved manner (i.e. via email), and request boldly to move forward in care.

I stood firmly as administration and other providers seemed condescending, yet I was willing to move forward. I was frank when your and other offices refused to comply with the provisions of the Health Information Privacy and Accountability Act. And in return, you have dismissed me.

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Who am I.

May 22, 2016

The Monday after my last post I felt incredibly supported by the epatient community (and many of the providers that make up that community too). I felt a bit of a high thinking – Yes! This is what advocacy is about! I’m not crazy! Other people feel this too! This means something!

Then the next day, my emotions took a marked turn and I started to feel bitter or just more frustrated. The patients get it. But the providers don’t.

I went to an appointment and walked out with the express feeling that I was being asked to sacrifice more of myself, my time, my energy.  After, I went to the pharmacy, where because CVS bought Target Pharmacy – CVS which I expressly left because of their horrible service – my prescription was not filled and my insurance was messed up.  And all I could think is that there is no more of me to give. There is nothing left of me. I have given it all to health and healthcare and been sucked into the maelstrom of tests and medicines and procedures, doctors and therapists, industry and politics. I have given everything and I have no idea who I am.

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