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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Propaganda and Communication

February 1, 2017

About a week ago I was asking my friends to support the start of what will be the March for Science.  I was surprised then to hear back from 3 of them that they didn’t care to get involved with such things and that there was so much “propaganda” out there.  More than surprised.  Shocked.  These are people who are quite smart and I consider to have level heads even if we disagree on things from time to time.  So propaganda?

And so I went down a rabbit hole to try to figure out this discrepancy between what they were seeing that I was not.  And along the way, learned a very important lesson about the meaning of propaganda and how we might change the way we communicate with each other.

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Rights

January 29, 2017

This blog has never been wonderfully defined.  It is “Health as a Human Right” because I knew when I started writing that human rights, especially the right to health is a passion of mine.  I wasn’t sure exactly where I wanted it to go and started by talking about current events or issues in healthcare and policy.  It has over the years come to include more of my personal experiences fighting physical and mental health illnesses.  And now I’m expanding the scope once again, to include all rights.

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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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