Healthcare Does Not Have a Problem With Silos

August 3, 2017

Healthcare does not have a problem with silos.

In fact, there are no silos in healthcare; there are only boundaries.

If we truly want to change healthcare, we need to break boundaries.

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See, Hear, Understand

July 30, 2017

I’ve written 2 posts on communication this year.  I’ve deleted both – the only two posts I’ve ever deleted thus far after over 6 years and 182 (soon to be 183) posts published on this site.  The first I felt people weren’t ready to hear.  The second didn’t feel true to myself.  But I’m going to make a third attempt because in the past 9 months, the subject of communication persists, from politics to healthcare to social media and relationships, and weighs on me heavily.

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#IrishMed Chat – Patients and Caregivers Involvement in Research

July 19, 2017

The Research Loop made made its first tweetchat debut on #IrishMed last Wednesday, July 12, 2017.  Dr. Liam Farrell from Ireland founded and moderates this tweetchat every Wednesday at 10pm BST and 5pm EST, bringing together an international group of patients, caregivers, providers, researchers, and many more to discuss a range of healthcare topics.  For this tweetchat, Liam was kind enough to have me as the co-host to talk about patient and caregiver involvement in research.

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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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