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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Docto Interview

Many thanks to Docto for our fun interview, which can be found here.  I enjoyed learning more about the Docto app, which uses algorithms to predict blood glucose levels an hour in advance (docto.me)!  I believe there is great potential with this app not only in terms of physical health outcomes, but also in easing the emotional concerns that go hand-in-hand with diabetes.

Having detailed knowledge as to where my blood sugar might be headed an hour from now would allow me to make more informed insulin dosing decisions.  It would also mitigate my anxiety in that the unknown, sometimes-scary diabetes stuff will become known before it even happens.  Docto literally makes the unpredictable more predictable, which is music to my ears from a holistic diabetes management perspective.

Docto did not ask me to write this blog post, but I want to say it:  I am impressed with Docto’s dedication to making diabetes management better for our community, as well as their genuine interest in learning more about the diabetes experience from those who live it firsthand.  Our interview renewed my hope that the diabetes burden will become lighter for all of us in the future thanks to healthcare innovation and teams like Docto.  I encourage readers to visit docto.me to learn more.

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

2.

My 2-year-return-to-insulin-shots-anniversary came and went a few weeks ago.  The anticlimactic day was all the validation I needed to know that this was the right choice for me.  I no longer count down the days, weeks, or months on shots; they are my new normal until I switch things up again or diabetes is cured.

People probably wonder why I still harp on my defective insulin pump saga, and the truth of the matter is that one can talk as much or as little about trauma as one sees fit.  Medical trauma is particularly cruel; our already-limited “control” further fades away as our cells cry out for insulin.  I continue to harp on this because the wounds are still fresh, however many years after the triage.  Yet the bandages of an engaged healthcare team have eased the pain, and I finally feel better.

Two years ago I feared that I would die of ketoacidosis while sleeping on my couch.  I worried that the graduate school experience I had always dreamed of might slip between my fingertips.  Or worse, that the mental desperation would become too much- that in my attempts to be heard my voice would eventually fade away.

Multiple daily injections (MDI) are not always pretty, but they are a guarantee that insulin is getting into the body.  MDI is literally and figuratively another shot at life.  (More to follow, but not everyone has this guarantee currently; they deserve a chance, too.)

Two years later and I have successfully completed my Master’s degree.

I flew to California twice to participate in Stanford Medicine X.

I didn’t die on my couch.

And I was too busy living to remember that it was my 2-year Shotoversary.

Insulin makes it happen.

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Feedback to Feed Forward

September will be here before we know it, and I am excited to share that I will be returning to Stanford Medicine X (#MedX) as a junior member of the ePatient advisory panel.  Additionally, I will be presenting in a panel entitled “Ah-Ha! moments in mental health and chronic disease management” alongside wonderful advocates Alan Brewington, Kristin Coppens, Danielle Edges, and Mark Freeman, and moderated by rockstar Charlie Blotner.

Accepted MedX 2016 presentations can be found here.  Our abstract includes the following information, some of which is quoted below:

“Mental health and chronic disease management are often interwoven topics in science. But what about the human side of the story? Whether or not individuals meet the diagnostic criteria for mental diagnoses, we all long for optimal mental and physical health to attain good quality of life.

How do we put a personal face to the feelings that hypoglycemia, or chronic pain, or other physical health struggles invoke in terms of our emotions? What moments have changed the way we think about mental health and chronic disease, and how can we encourage these same poignant healthcare interactions in the lives of others?

This panel will explore just how vital this conversation is in chronic disease and mental health management by featuring multifaceted patient, caregiver, and mental health advocate perspectives. In order to facilitate this conversation for all patients, we must raise the topic from the very source: ePatients themselves. Therefore, this panel is ePatient-centric in its selection of presenters. We will identify crucial learning moments in understanding our own mental health, while promoting a transparent discussion that remains much-needed in humanizing healthcare.

…Ah-Ha! moments relevant to the following topics will be discussed:

  • Why the words we use matter so much
  • Barriers to care
  • Continuum of “before, during, and after” mental health becomes a focus of care management; early intervention in normalizing this conversation
  • Caregiver resources and how to talk to children/teens about difficult health topics
  • Managing multiple diagnoses
  • Curtailing advocacy “burnout””

Source (linked here): MedX 2016 accepted presentations, “Ah-Ha! moments in mental health and chronic disease management.”

In preparation for our upcoming panel, we wanted to reach out to our respective advocacy communities to see if there are pertinent points that you would like us to consider and to possibly discuss in the panel (time-permitting).  I recently wrote about the diabetic online community (#doc) needing to hear more from “The Whole” in diabetes, and this is a good platform by which to reflect upon feedback from multiple sources.  While one presentation cannot represent all affected by health conditions, we can try our best to integrate community viewpoints into what we discuss.

With that said, if you have ideas about mental health and chronic disease of any type, please feel free to contact us.  We would love to listen to your perspectives!  My contact information can be found here, or feel free to comment on this post if you are comfortable sharing your thoughts publicly.

Thanks for your support!  We are so looking forward to MedX!

 

#NoFilter Coffee?

In my enthusiasm for the start of DBlog Week yesterday, I did not give a proper shout out to Karen Graffeo until the Comments section of my post.  I’d like to rectify that here.  This is my first DBlog Week, and I am absolutely loving the discovery of blogs that I did not know about beforehand, as well as hearing from my usual favorites.  How cool is this community?  Seriously.  It’s bursting with goodness this week.  I am sure that organizing DBlog Week involves tons of hard work on Karen’s part.  Not only that, but every time I go to comment on a post, I see that she has already left her words of wisdom behind!  What a great example of giving back to this powerful community.  Thank you, Karen!

Here’s my take on today’s theme, “Keep It To Yourself”:

Those of you who read my blog or follow me on Twitter already know that I wear my heart on my sleeve and I speak with #nofilter in the heat of the moment.  There are some things that I have been rather coy about, though.

When I first began blogging in September 2014, I vowed to be transparent, and I still uphold that promise.  Sometimes it makes me feel like I need to share everything, though.  Realistically, I can be honest and helpful in the diabetic online community without jeopardizing the privacy of those who have not necessarily signed up to be featured on a diabetes blog.

When I was in high school, I used to hide behind bathroom stall doors when taking insulin injections.  My classmates did not know that I was diabetic until the end of my freshman year. I built up my “diabetes coming out party” so much in my head that I turned it into a much bigger deal than it was in reality. Once I was cool with diabetes, everybody else was, too. For the sake of living my life with more ease and with more safeguards in place in case of an emergency, I eventually disclosed that I was diabetic. A weight was immediately lifted. No more hiding syringes in my coat pocket. No more making excuses about why I had to sit out for a few minutes at soccer practice while my blood sugar came up from a low. The rest is history. Now ya’ll can’t shut me up about diabetes, right?

We all come to terms with diabetes in our own unique ways. Some people may always choose to be private about diabetes. Others might spread the diabetes Gospel loud and proud. We are all individuals, and just because I am outspoken about my life with diabetes does not mean that it is the right path for someone else to follow.

  • I have a type one diabetic relative who I have alluded to at times.  For the sake of my relative’s privacy, I do not mention personally-identifiable details online.  While my relative is not necessarily shy about diabetes, I also do not feel that it is my place to tell my relative’s story. It is not my own story to tell. If/when my relative ever wants to get involved in the #doc, I will always support that choice. But ultimately that choice is up to my relative, not me.
  • I also hint at my employment duties at times, not necessarily because I have some big, fancy, secretive job, but more because in a selfish way the #doc for me represents a little cocoon in which I go to seek comfort and strength. If I mingle my professional life with the #doc, it loses that element of “everybody gets it here” that I have grown to love. This is not to say that diabetes and professional lives do not mix. Heck, there are plenty of #doc success stories to show that one’s passion can become a great job. This is just where I am here and now, and right now I need the unconditional support that I find in the #doc. No strings attached.
  • I have never named my personal doctors and nurses on my blog. They did not sign on the dotted line to become the heroes that I describe in my writing, so I do not give their identities away. They may be humble about what they do, for example. I try to respect those boundaries. This is not to say that I would not disclose that information in the right moments. If someone lived in my geographic area and thought that my personal doctor could help him/her, by all means I would ask my doctor’s permission to pass along contact information. The point is similar to what I noted above with my diabetic relative: I try my best to respect that perhaps others do not want the spotlight on them.
  • My tweets have also been vague regarding the topics of mental health and sexual/physical assault, also out of respect for friends near and dear to me who are some of the strongest people in the world. Just know that I support their advocacy causes wholeheartedly. Society is starting to turn the corner on stigma in these situations, but we still have a heck of a long way to go.

With the final point in mind, I invite you to foster a Coffee Convo with someone who may need it.

It is okay to have #nofilter. But sometimes we do not need to yell things from the rooftops to get the job done. We can respect others’ privacy and still show the world that we care. I kindly ask you and your coffee cup to do so.