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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Three Words

February 21, 2019

Three words

“I have trauma”

Three words that need to carry the gravity of more than three words can carry. They need to express the inexpressible. They need to be the words that tell the story that can’t be told.

Trauma in healthcare means different things but not usually what these three words must stand for. There are trauma patients that come through the Emergency Room door on stretchers, trauma surgeons standing by. Nurses and doctors who treat these traumas with efficiency and dedication.

“I have trauma.”

But they can’t see it.

Three words.

They need to know and I can’t say.

How deep it runs.

Where it came from.

What treatment it needs.

They keep asking what’s wrong with me when I need them to know what happened to me.

The types of trauma – too many, too varied.

The understand the trauma of a gunshot wound or violence or natural disaster.

I know they won’t understand my trauma.

There’s no time to explain, but it will affect everything.

There’s no time to read what I try to write when the words don’t exist to tell them out loud.

There’s time for three words.

“I have trauma.”

But they aren’t enough.

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On Self-Expression, Holding Space, and Reaching In

February 20, 2019

I wrote a thread the other day on Twitter addressing the issue of people not being able to hold back with their “helpful” comments and how holding space is often what folks who are going through difficult times need. It seemed to strike a chord with many, so I’m reposting it below (with additions).

Before I repost, I will say that offering unsolicited advice is a common problem people in patient and disability communities face. People who think that they are being helpful by telling you what worked for them. Or people who want to interject with problem solving. Or people who want to turn the discussion to fit their needs – their need to be seen as knowledgeable/right, their need to be seen as helpful, their need to have their experiences and emotions validated first. This is not okay.

I think many disabled people are becoming more assertive in saying unsolicited advice is not helpful and it crosses boundaries. But when we do, we are met with backlash of those who are “helping” as not being grateful enough or as complaining too much.  Essentially, “well why are you saying anything if you don’t want to fix it?” or the versions of those “helpful” people  saying that hearing someone relay their experiences is “too much” for them. This dynamic needs to change. People need to respect boundaries of those expressing themselves, validate those experiences, hold space, and reach in with humility.

Thread:

Dear Twitter users, It is perfectly ok for you to read someone’s expressions of frustration, obstacles faced, upset, or other emotions without jumping in with “solutions.” It is healing and healthy for people to express themselves as they process their realities.

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