The Preface to Advocacy Project

September 14, 2019

I started something new – The Preface to Advocacy Project. On August 18, 2019, I sent out a tweet asking:

What is something you wish you knew before getting into advocacy?

What is a tip you’d give to someone who wants to start advocating?

And from there The Preface to Advocacy Project started. The insight given in the replies was compiled in one document to start a conversation on what new advocates should know when starting their own advocacy journey.

Meant to empower advocates, The Preface to Advocacy Project aims to give an inside look at everything from what to consider before you commit to advocacy, the emotional realities of advocating, to the difficulties and rewards encountered while advocating, and more.

I hope you’ll take time to look around the site and contribute to the project.


September 14, 2019

I’ve shared information on validation in other posts but decided to make an infographic to make the information more accessible. Along with holding space, reaching in, and allowing folks to express themselves, validation can be a powerful way to help others and show you care.

On My Advocacy Limitations

June 8, 2019

A post on advocacy and being sick – primarily the issue of my not being able to do as much as I want and know, if circumstances were different, I could.

It really hit me again last Monday. Comments were due on new rules for interoperability (and other issues) and I was able to submit my comments but I felt they were wholly inadequate. I could not spend as much time on them as I’d like and they were far less than I wanted to say.

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Problems with Interoperability and Coordinated Care

May 25, 2019

Interoperability: connecting technology across health care. The idea is that if your information is in one system, clinicians can access your information wherever you go – like med lists, diagnoses, allergies, and more.

Do you know how it can backfire? Has it backfired on you? Probably not.

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Unicorn Care

May 17, 2019

Unicorn Care: The type of whole-person, patient-centric, trauma-informed, coordinated care that all patients seek and deserve and yet remains mostly a myth. The kind of care that seems unachievable and out of reach because of corporate greed, proprietary interests, clinician burnout, and lack of imagination. The kind of care that takes all those buzzwords listed above as well as those about innovation and disruption and makes them meaningful, not just rhetoric.

I have been seeking Unicorn Care for a very long time. And In April 2019, I found it.

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My Care Concerns Document

April 24, 2019

A few years back, I started working on my appointment primers – documents to bring to each appointment that give my history, symptoms, and a little bit about me. I posted a template of these primers here for others who might be interested in making their own.

As part of the primer, I took time to outline My Care Concerns – using bullet points to hit the highlights of what is most important to me, in fact, the issues I most often face when seeking care. I put these care concerns on every primer that I give to every new provider. Then a year ago, when I was facing surgery for my c-spine, I wanted to transmit this information in a more universal way and with a view toward Trauma Informed Care. And so I developed the document below.

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On My Pain

March 21, 2019

My relationship with physical pain is damaged. It always has been. Pain has always been a part of my life and always will be but in the last month and a half since surgery, I’ve had a reckoning with pain. A reckoning that led me down paths of past trauma. A reckoning that left me in more pain. A reckoning that revealed how unhealthy my relationship to pain is and how flawed and fraught my history of pain has been. A reckoning that started to help me integrate while simultaneously creating chaos within.

This reckoning ultimately seems to be reinforcing how I cope with pain. Because throughout this process, I asked for help to understand pain, to help me come to terms with how dangerous my relationship with pain has become and I found that there is nothing and no one to help.

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