Trauma-Informed Advocacy

Healthcare talks (not enough) about trauma-informed medical care, which is summarized best by what its name so states.  But what about trauma-informed advocacy?

This could easily become a dissertation or a thesis topic, and, fair warning, I may pick your brains in the future if/when I pursue another grad degree.  In the meantime, if you want to read a dissertation, or even a SparkNotes version, on trauma research, you have to put in the hours.  For those interested in learning more, some recommended starting points would be to look at how trauma is clinically-defined, to read the DSM V PTSD diagnostic criteria as examples, and so forth.

Just as physical health can impact mental health and vice versa, so, too, can trauma.  For example, we know trauma changes us on a cellular level, is linked to autoimmune disease, and can negatively influence mental health.  This can, in turn, greatly diminish an individual’s quality of life, while also hurting society (lost work production, etc.).  For years I have been preaching that trauma is a public health crisis that costs us so much- financially, emotionally, physically- and this article wowed me in how well it articulates those points.  While not all trauma is preventable, much of it could be prevented/lessened if human beings simply treated one another better, and if healthcare provided more opportunities to cope well.

But, for today, this blog post is fodder to perhaps get us thinking about our advocacy.

Not every person, nor every advocate, has experienced trauma.  Yet, when I have looked around the room at healthcare events in the past, I have seen the battle scars of those who may have publicly or privately disclosed their painful histories with us.  Admirably, advocates have chosen to help others, to be intellectually curious, despite their own hardships.

Havoc-wreaking health conditions. Bloody medical procedures. Abuse and/or neglect. Poverty. War. And, sadly, the list could go on much longer.

We may have been brought together, on Twitter or at a conference, for example, because of our mutual interests in healthcare-related topics.  And yet, I often find there is another common denominator in the room: trauma.

Diabetes fireside chats often ask: Which came first, the diabetes or the depression? (Or perhaps, a little of both?).  Knowing what we do about the health effects of trauma, this theme remains prevalent.  Trauma often begets trauma.  Maybe workplace harassment trauma triggers an autoimmune attack, and then the difficult reality of living with a chronic physical health condition compounds, molding trauma upon more trauma into a teetering Lego castle of human life.

I recently tweeted that in educated adulthood, I often find myself wondering about the manageability of my own diabetes if the inflammatory effects of trauma history were not involved (i.e., would type 1 diabetes, an autoimmune condition, be more tamable without trauma?).  Probably.  In layman’s terms, cortisol is released when stressed, leading to insulin resistance, and around we go.

The “five types of diabetes” headlines are all abuzz recently.  Yet, I believe that there are much more likely to be 5 gazillion types of diabetes, all manifesting across a spectrum that caters to our individual genetic makeup, environment, and so on. This includes our traumas, or lack thereof. Just as other major autoimmune diseases go through times of “flares,” so does type 1 diabetes, in my opinion (and despite our reluctance to use the term). Trauma can potentially be the cigarette lit by the gasoline tank, and it is not far-fetched that this could set diabetes aflame- a “flare” going off in the night.

While I will surely be critiqued for my subjectivity here, I can tell you that behind closed doors many big wig diabetes doctors have entertained, and even suggested, some of this material. Recognizing that trauma may make my diabetes more wily, at times, does not mean that I am giving up or copping out.  It has actually provided my healthcare providers and I with some much-needed peace (which, I might add, can positively affect emotional health and blood sugars, and don’t we love how complex this all is?!!!). We can forgive ourselves for the moments where we do everything “right” and the outcomes remain frustrating, and we can draw a more practical game plan moving forward. Although the scenario is not ideal, there are options instead of dead-ends.

The truth is, no one knows exactly the impact of every minutiae of each diabetes story, or healthcare story, or an individual’s overall life story, and we probably never will.  But is that any excuse for our healthcare ecosystem to lack supportive resources for folks withstanding the tough stuff?  How might we provide quality, holistic care earlier, and better?

Some other Stanford Medicine X (#MedX) Scholars and I tweeted aloud on this idea: What would our healthcare stories, and current health experiences, be had trauma support been different? And, if our healthcare stories were different, how would the larger fabric of our stories as humans be changed?

We unanimously agreed that, at the very least, life would have been easier physically and emotionally.  Having that validation that it is okay to hurt, and to seek proper support for what you know is real, can be the difference between being stuck in the quicksand of an overwhelming health condition, or keeping one’s head afloat.  I can only speak for myself, but groupthinking about this was incredibly powerful and a lot less scary than Ally-alone-thinking inside my own skull.

If there is a MedX reunion in the future (please!!!), I believe it would speak volumes to collectively gather as advocates initiating this conversation from such a platform.  This does not mean that everyone would use a megaphone to discuss things they may not be comfortable sharing.  Far from it.  Rather, I imagine us simply standing together in unison, acknowledging the common denominator of trauma-truth that is so often overlooked in healthcare.

So, today, I wonder aloud again.

Without trauma:

What would my diabetes be?

What would my mental health be?

Who would I be?

Would I even be an advocate?

Will there be a day when the common denominator in the room is our access to equitable opportunities and resources to achieve our potential, to live full lives despite whatever we have endured, and to feel supported?

What would our society look like, then?

Are we really okay with the current status quo?

How might we talk more about this?

Are we listening?

 

 

 

 

 

 

 

*This post was updated after the original publication for clarity purposes.

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Ah-Ha!

Video of our 2016 Stanford Medicine X panel, Ah-Ha! moments in mental health and chronic disease management, can be viewed here.  The panel speaks for itself; it was brave to participate; it was brave to be a member of the live audience- at Stanford and/or online; it is brave to watch the video; it is brave to reflect on mental health and chronic disease management.

Many thanks to Charlie, Danielle, Sarah, Mark, and so many others in the MedX family for making our 2016 panel such an empowering and enlightening experience for so many.

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Photo credit: Stanford MedX Flickr

 

Featured image photo credit: Mark Freeman

Before #MedX

Last year’s Stanford Medicine X (#MedX) took place during the same weekend that I created my diabetes blog, Very Light, No Sugar. I was new to the internet blogosphere in September of 2014, and I spent much of my time that weekend soaking it all in.

This exists?! THIS! These concepts that have been bouncing around in my head for so long have a place and a name and a community?! Perhaps I can be part of it? Everyone seems friendly and cool! YES!!!

These were my initial thoughts as I perused the blogs of the diabetic online community (#doc) and followed the #MedX hashtag as ePatient delegates and other MedX attendees tweeted live from the conference. I later watched videos of the MedX 2014 speeches, read blogs of MedX alums, and visited and re-visited and re-visited some more the 2015 ePatient application portion of the Stanford Medicine X website.

I made the rookie mistake of writing 1,000-word answers to the MedX application instead of providing 1,000-character responses as instructed. Upon discovering this issue, I stripped my answers down to the core of why I felt so passionately about this conference and improving healthcare, and I finally clicked “submit” late one evening. Fast forward to now- about five weeks away from MedX 2015- and I could not be more excited to be an ePatient delegate this year and to share the information absorbed at the conference with all of you.

MedX is so special because it takes the “What if’s?” and does not shy away from them in fear.  Rather, MedX imagines and creates the possibilities.  MedX connects the respective patient, provider, and technology dots of the healthcare equation by putting them all together at the same conference.  They are allowed to work together, to dare to dream big, to share the positives and the negatives of their personal healthcare experiences, and to learn from one another in the process.  Recognizing that healthcare is an ongoing evolution, MedX keeps the conversation going before, during, and after the conference.

Many MedX alums have noted how much their lives were positively-influenced by attending MedX. With the conference just around the corner, I find myself keenly aware that this is the “before” stage for me. I study healthcare, work in it, live it through my experience as a type one diabetic, and have moments of inspiration and frustration along the way. After attending MedX from September 25 through September 27, 2015, I will gain a viewpoint that covers a vast array of healthcare experiences- those of other patients, those of providers, and those of technological gurus and innovators in the healthcare field. This will be the “after” stage. I already know that this opportunity is a blessing beyond what I can imagine right now, and I am so very thankful to get to attend MedX 2015.

I am most excited about learning from different perspectives while at MedX. Although I know a lot about diabetes because I live with it, I recognize that healthcare goes far beyond insulin injections and endocrinology. At MedX, there will be industry leaders discussing breakthroughs in technology, ePatients who have battled brain tumors or acted as caregivers for their loved ones, and providers who put their patients’ best interests first and foremost. Taken together, all of these contexts are a valuable asset to improving healthcare as a whole.

The fellow 2015 ePatient delegates to MedX are a great crew of people, as are the Stanford Medicine X administrative team and advisory board. MedX participants come from diverse backgrounds, encounter different health obstacles, and have unique experiences from which to draw from. Yet we share an unspoken comradery before even having stepped foot on the Stanford campus. We have put ourselves out there online because we believe wholeheartedly in improving healthcare. We advocate for better access to care, more open dialogues amongst all members of the healthcare equation, promising futures for those who endure our respective disease processes, and more. We know the feelings of joy on the good days and pain on the bad days, and we maintain hope that the best is yet to come in the future. MedX provides the perfect environment in which to work hard towards these goals and to be a part of the conversation about improving healthcare.

For more information on Stanford MedX, please visit medicinex.stanford.edu.

 

Disclaimer: I have received a partial scholarship to attend MedX as a 2015 ePatient delegate. Opinions expressed here are strictly my own.