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.

Medusa

 

I don’t really like this picture

the Medusa hair

the empty, searching eyes

behind the mask of a smile.

 

“Emotional support” animals exist

because “emotional support” humans

sometimes falter

with their words.

That unspoken empathy

sometimes best fulfilled

by a creature

weighing less

than two pounds.

 
“Can you bring me my baby?”

I’d asked my mother

“Birthday cake

wasn’t sugar free

after all”

I’d sighed.

 

Unfairly pushing the blame

of an insidious condition

onto another

in the exact ignorant manner

I have grown to detest

in the abundantly phony

“Tame Your Diabetes!” articles.

 
My vision blurry

I already knew the number

was 400+ and climbing

without having to look

at the faded screen

of an overused machine

supposedly meant to sustain life

while the cure lingers

just out of reach.

 
“Can you bring me my baby?”

 

 

No Rules Poetry

Bingo


DBlog Week topic #4 is in regards to the healthcare experience.  Yours truly could write a novella about this, but instead I will direct you to a few relevant posts.

For my healthcare rants and proposed solutions, please see here, here, and here.

Erin Gilmer’s “To All My Providers” is a must-read.

I am well-aware of the flaws of our healthcare system, having studied healthcare in grad school, worked in it, and lived it for 25 years as a type 1 diabetic.  But for some odd reason, I just don’t feel like complaining about those flaws tonight.  Instead, I want to share a vignette about the spirit of healthcare that I wish the system embodied more often.

In 2014, I took a summer elective called “Healthcare and the Older Citizen” as part of my Master’s program.  I don’t know if I can really relate to this stuff, I thought.  But the instructor was my favorite, and we got to tour nursing homes and elder care facilities all over the state of Rhode Island.  Wins all around.

The juxtaposition of two facilities has always stuck with me.  Early in the season, we toured a fancy nursing home which cost enough to afford college tuition and then some.  The food was topnotch, organic, and prepared by the best chefs in the state.  The amenities rivaled an episode of MTV Cribs.  The picturesque sunsets were the stuff dreams were made of.  By the end of the tour, my classmates and I were ready to pack our bags and move in!

The residents at Fancy Home were not particularly memorable.  Nothing bad happened, per se, but nothing great was happening, either.  They kept to themselves and spent their days dining on lobster and not talking much to their neighbors.

Later that summer, we visited a different location, a Church-run, low income assisted living facility.  This place looked like the storage shed of Fancy Home.  The cafeteria was reminiscent of my Catholic grammar school days- overcrowded and overheated.  The food was run-of-the-mill, easy mac-n-cheese or hotdogs with green beans.

But the residents at Church Home were different.  There was a noticeable pep in their step as they gave us the grand tour.  One woman opened up her apartment to our entire class, and as we crowded into the room she showed us a black-and-white photo of a relative who- despite the diagnosis of diabetes at a time predating blood glucose meters- had jetted off to explore the world.  There were no regrets in that decision.

Other residents told us about the Friday evening luaus and Saturday Bingo tournaments, and the happiness of spending one’s days winding down on earth in the company of the best friends you could ever hope to encounter.  Life was good.  Death was with dignity, surrounded by people who cared about you.  The Afterlife was even better.

My classmates and I graduated from that course with a newfound appreciation for humanity in healthcare.  We understood that no matter how much flashy technology a hospital has, or how much money is invested, you still cannot put a price on healthcare that emphasizes the “care” part.  Love, respect, and grace go a long way, and these characteristics are relatable to any walk of life, any generation, any healthcare facility.

In order to provide good quality of life, healthcare does not always require the bells and whistles.  Perhaps we have been looking in the wrong places all along.  The secret to living well has been right in front of us, on Saturday evenings, at the Bingo tournaments.

 

Short and Sweet

If you have wanted to get more involved with the diabetic online community (#doc) but are not quite sure how to do so, today is a good day to dive right in.  We don’t bite!

Use the hash tag #IWishPeopleKnewThatDiabetes (brought to us by Kelly @diabetesalish) to document what you want others to understand about diabetes.  Advocacy starts with the first tweet, Facebook post, blog writing session, and so forth.  And advocacy can happen anytime, not just today. We’d love to have you onboard!

The Real Patient Portals

For privacy purposes of those discussed here, some of the details of this blog post have been altered/omitted. The heart of the story remains the same.

 

To avoid the throbbing headache that is commuting from Providence to Boston during morning traffic, I stayed over in Massachusetts prior to my Joslin appointments this week.

I hoped to catch the end of the Providence-Villanova game at the hotel bar, but the thrashing PC was receiving was so embarrassing that the bartender instead flipped between The Voice and the Bruins. I asked a patron if the seat next to her at the crowded bar was available, and she nodded. The restaurant was busy and it seemed like it would be a while before my dinner was delivered, so I took a big gulp of my classy Bud Light and vowed to make friends while I waited.

“Are you here for business?” I asked the professionally-dressed woman.

“Actually, my child is being treated at Children’s Hospital.”

“I’m sorry to hear that. But your child is in phenomenal hands.”

“Yes, we have been here for a long time, but soon we will travel home with a stronger, healthier child. We have been very blessed.”

And so we talked for almost an hour. We discussed her home many miles away from here, admired the nurses who followed their professional callings to ease the suffering of their patients, educated one another on our respective areas of patient or caregiver knowledge, and, to be quite honest, took solace in finding a bar buddy who understood the stress and anxiety of Boston medical appointments. Sure, I seek out care in Boston because it is the best, and this lady does, too. But that doesn’t make it any less gut-wrenching every time the appointment days arrive.

We eventually wished each other well and parted ways. I want to give SuperMom an anonymous shout out here, though, because of the example of strength that she provided that evening. I have so much respect for the parents of any child who faces illness- whether that be type one diabetes or something else. Being the patient for most of my life, I have mainly been preoccupied with my own suffering- something I know that I can and will handle.

Watching others suffer, though, makes me nauseous, anxious, and somewhat frozen in “What do I do?!!” mode. SuperMoms and SuperDads don’t have the option of “What do I do?!!” mode. They activate “Do” mode because their child is hurting and they want the pain to stop. They remain calm when the world is shaken up around them. Yes, they have days of sadness and tears, but they try their best to provide their children with the greatest lives possible, to comfort them on the rough days, and to keep on going.

So, to SuperMom at the bar, cheers to health and happiness for you and your family.

The next morning, I hastily checked out of the hotel and made my way to Joslin Diabetes Center, where I had one thing on my mind: very light, no sugar coffee, and even better if you can hook me up to an IV drip of it.

I generally enjoy my Joslin experience because it is one of the only places on earth where I feel completely safe from a diabetes standpoint. If I go low or high, there are plenty of people who know how to help. But this time, I was nervous and emotional, as it was my last appointment with Current Endo before her departure; additionally, these days are quite frankly long and exhausting no matter what the outcome is.

I fumbled my way to the coffee stand through a haze of anxiety.

“What’s ah matter, my darling?” the coffee stand employee cooed, her brow furrowed.

“Oh, nothing. I just need some coffee to wake up,” I said, shrugging it off.

“I asked how your morning was and you didn’t reply,” she sounded off, much to my surprise and admiration. (I like a person who tells it like it is!)

“My apologies. I must not have heard you.” My level of distractedness due to nerves was obvious now.

Without skipping a beat, she looked me straight in the eye and stated, “You will be okay. You are so strong.”

This kind woman had never met me before. She had no prior knowledge as to whether I was in the hospital district of Boston as a patient, a caregiver, a sales rep, an employee, or so on. But she knew, without hesitation, that I was hurting simply from the look in my eyes. She seemed to recognize that I was the patient, and that I was trying to keep it all together. Her confidence that I could do this was the gentle nudge I needed to go check in at Joslin, ready to take on the day and whatever it would bring.

Blinking back tears, I thanked her for her reassurance and sauntered off with coffee warming my hands and coffee shop lady’s words warming my soul.

After my appointments, I needed more coffee before racing back to work. I stopped at the same coffee kiosk, and the same employee was still there. I filled my cup and went to pay.

“You were right. Everything was okay. I wanted to thank you for what you said earlier. You made me feel better.”

“God will take care of everything,” she replied.

“Yes. And there should be more people in the world like you. Your joy is contagious.”

And we both fought back tears, nodded our heads in agreement, and vowed to pray for one another.

Bars and coffee shops are the real patient portals. These are the watering holes for the warriors- the patients and the caregivers- to assemble and collect their emotions. Here, the pep talks happen. The fears and aspirations are relayed. The hugs are handed out a little more freely. The tears are dried if necessary. God is there, as these women proved to me this week.

Lucky for me, I’m always thirsty. Something tells me I’ll be back soon.

To SuperMom and SuperCoffeeShopEmployee, this blog post goes out to you. You are both inspirations. Thank you…