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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Not simply saying yes

January 3, 2017

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:

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Assessing our advocacy efforts

January 3, 2017

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.

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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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What do you want for the holidays?

December 9, 2016

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.

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Who Is Included?

December 5, 2016

I can’t count the number of times the topic of who is and should be included in policy discussions and conferences comes up.  Just this week I encountered two examples where patients though ostensibly “included” were not included really at all.  Considering how long this has been an issue and how often it is discussed in patient communities, I am still disappointed that the discussion continues and inclusivity has not really expanded to mean all patients included.

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T1International and Rights of People with Type 1 Diabetes

November 30, 2016

T1International advocates for #insulin4all – an endeavor to ensure all of those with diabetes have access to the medicine, healthcare, and education they need to thrive.  I had the distinct pleasure of helping T1International develop a document explaining the human rights aspects for those with diabetes.  I was quite honored to be asked to offer my human rights law background to outline the various organizations and documents that make up our right to health and to insulin. Read the rest of this entry »