Tuesday, February 4, 2020

Glass Walls: Wellness Advantage in the Healthcare Professions

Experience has taught me time and again that to be happy and feel good about what I am doing, I should listen to myself and be myself. I don't know if that is a struggle for most people, but it is for me. I have to work hard to ignore the well-intentioned suggestions and comments and projected aspirations of others. It is hard work because it is lonely, and loneliness is heavy.

As an entrepreneur and particularly as a solopreneur it is wonderful because I can act and execute on my weirdest, most out-of-the box ideas without anyone trying to talk me out of it. It is incredible to spend my days making things that originate in my mind a reality, and especially rewarding whenever any of those little ideas pans out in any way. It is lonely because there is no one there to see it, and when I try to share my experiences with those around me, the amount of explaining required becomes exhausting. I’ve recently realized that it is futile and that if I want a more rewarding experience in trying to share my thoughts on this venture, I have to turn ever further outward. And so here I am.

No one I know is trying to do anything remotely like this. Talking to someone about disrupting the healthcare industry as a life’s work when they are busy dealing with all sorts of things that I can’t begin to relate to – bosses, insurance, kids, medicare, bureaucracy of any kind…. It just doesn’t work.

And so I carry a burden of loneliness, especially amidst my fellow healthcare providers. For the longest time I took it personally, without even realizing that was what was happening. I would talk about what to me, feel like visionary dreams of a realistic path to dramatically improving healthcare and reversing a trend of low efficiency, high cost, and abysmal patient experiences. I was met with blank stares, skeptical questions, or statements intended to encourage but off-base to such an extent as to be either irrelevant or worse, discouraging (“Things will pick up as soon as you start accepting insurance!”) My husband is supportive and given that he is my forever-sounding board, he understands more readily than most what I am trying to do and believes I will do it, and that helps. But the ache to share this path with my fellow healthcare providers still runs deep.

This loneliness I feel is the prime reason I chose to walk this bumpy path straight into private practice. Despite meeting many practitioners and educators along the way whom have provided me with valuable insights, encouragement, hope, and of course, education, I have encountered a glass wall between myself and almost every professional I have met that I long could not name. Now that I have a name for it, I can’t rest until I share this insight with as many people in the healthcare world as I possibly can, and assuage the consequences of it for as many patients as I possibly can.

The name for that glass wall is Wellness Privilege.

On one side of the glass wall, there is wellness advantage, and with it, almost everyone in the healthcare professions. On this side, there are experiences like growing up in safe neighborhoods with sidewalks and yards or nearby parks. There are supportive, well-adjusted parents. There are vacations to little rented beach houses, regular checkups, and no worries ever about where the next meal is coming from. There are cars and busses and trains that always run to wherever needs to be gotten to, exercise for the sake of feeling good, and schools that have clean water, heat, and caring teachers.

On the other side, there is wellness disadvantage. This is the side where I my family and I live and grew up, along with most patients with chronic illness, persistent pain, obesity, diabetes, smoking and drinking problems, anxiety, language barriers, and any number of other conditions presently under the innocuous label “health disparity.” On this side of the wall, there are long drives or busy highways or provider shortages between us and all those parks and safe neighborhoods and regular checkups. There is incarceration and fear of deportation. There are parents who hit or neglect or yell or drink all the time or just aren’t around. Unconditional love is a fairy tale. There is hunger, whether from an empty belly or one only ever fed with the processed garbage we allow to pass for sustenance in our grocery stores. There is dysbiosis treated with antacids and Metamucil for years. There are eating disorders. Violence. Rape. Racism. Ableism. Forever-rented homes that change every year or three and the disruption of school and job changes that go along with those moves. The worst part is that there is no visible shortage of health literacy or education or competent healthcare, thanks to the effective disguise of never having known anything different and assuming that this is everyone’s life. Or, at least, the life of everyone who is not impossibly wealthy and educated and beautiful and inexplicably thin and healthy and together and generally good in a way we simply can’t ever picture ourselves being.

Most people never notice the glass wall. I’ve been thinking about that glass wall for three years now, and all the googling in the world does not yield anything that I consider a meaningful or helpful perspective about this wall. People on both sides just bump into the wall and bounce off of it without even noticing. Some folks on the advantage side know that there is something there, and throw words like “disparity” and “social determinants” and “biopsychosocial” at it. But those words are very long and a bit extra bouncy. Every once in a while, one will lance through an invisible hole in the wall, but when it crosses to the other side it looks more like it says “condescension” or “crazy” or “stupid.”

On that other side of the wall, there are lots more folks who know that something is there, and the theories about what it might be are much more variable. People throw lots of things at the wall from this side, and a lot of those things are sticky and opaque. Instead of bouncing off, they splatter and smear. They distort the glass wall and make the people on the other side look like monsters dressed in heartlessness and greed and maybe even kickbacks from drug companies. People on the disadvantage side of the wall throw buckets of things like anger and blame and frustration, never realizing that from the other side of the wall, everyone is terrified of getting splashed despite their obvious safety. Sometimes tears seep through the wall, but on the other side they don’t say “I am sad.” They expand and say so many other things too. Sometimes they don’t even say “I’m sad.” They say things like, “I am unstable and will make it hard to get all the other things that need to be done finished.” Or “I am more complicated than others and will require time and thought and attention that is not feasible right now.”  Or maybe, for some, “That’s a hot mess express train and I need to get TF out of the way.”

Not so long ago, around the time I started physical therapy school, I found a doorway through the wall. It seems to open mostly one way – from disadvantage to advantage. Most who find it let it close behind them without ever looking back. I can’t seem to do that, though. I’ve stepped through to the advantage side a million times, but I always feel like a tourist and every time I talk to a patient who is on the other side, I’m right back there with them regardless of where I or the wall or the door were only a moment before.

Sometimes I think that I’ve never left my side, and it’s just that now I can hear through the wall. Those times are the worst, and when I feel the most alone. I hear people say things that no one from my side of the wall was ever meant to hear, as the advantaged try to explain the disadvantaged from amongst themselves. It happened so often during physical therapy school, because that is when we know the least and ask the most innocent of questions – Why?

I rarely ask why, because I know. But when someone finds the door before they’ve ever bumped into a wall – they don’t even know they’ve passed through a door. They never see the door open or close. They are just walking, following those who already walk freely on the other side, explaining to them why those others are stuck without really having any idea what it is like over there. When those students finally have a moment to look back they are often too far in, and all they see is the stickiness and smears and monsters on the other side, glaring in a way that somehow says, “I am non-compliant.”

It’s different for me. I walked into that wall more than once before I found the doorway, and I still have the scars. I’ve watched my family members crash into it and die. I’ve stood next to the doorway beating on the wall for years, and I can honestly say that the best anyone on the other side ever did to help me find the door was gesture vaguely at something invisible off to the left. I can’t forget the wall is there and I can’t walk through the door and let it close behind me. I can’t stop hearing the voices on both sides of the wall. So what do I do?

Mostly, I throw wrenches at the wall. Sometimes I drill a little hole through. A few folks from either side are starting to hear me clanging away. I spend a lot of time washing smears off the wall, from both sides. I grab the lancing “condescension” out of the air and turn it into understanding with drawings and diagrams and discussion groups. I know these are all pieces of a greater whole. Even if no one else can see it, I’m building a diamond-tipped bulldozer, and someday I’m going to drive it right through that wall.

(If you are a healthcare professional and come from some form of disadvantage, particularly if you are alone among your family, please reach out to me. I always have time for like minds, because those rare moments of understanding and shared vision are life-giving in a way that nothing I have regular access to in my normal life can be. I can reached via email at pt4thepeople@gmail.com. If you’d like to learn more about me and everything I am doing to #DisruptHealthcare and how you too can #ChooseToCare, follow me on Twitter via @PT4ThePeople or visit my patient-focused blog, http://patientphysicaltherapy.com/blog)

Thursday, August 1, 2019

Understanding Wellness Disadvantage: Smoking

Screenshot of HHS.gov World Lung Cancer Day post on Twitter
The well-intentioned Twitter post that inspired this post.
You may be aware that I was inspired to join the health professions after my father died of lung cancer at 58. I have a theory on why lung cancer is and has long been the number one cancer killer.

Patients who smoke are subjected to medical bias & neglect for years pre-diagnosis under the erroneous assumption that they don’t care about their health. It is an easy assumption to make, and during my father’s illness I saw it in medical professionals of all kinds. Since then, in 6 years of education & clinical training, I have seen it come up again, and again, and again — with devastating impacts.

It isn't hard to understand why medical professionals exhibit bias toward smokers. It is a key risk factor or cause for a panoply of illnesses.

What is much harder to understand is why so many people still smoke. 

Why, even after it begins to cause problems, do so many people keep smoking and bat away nudges to quit with seemingly nary a thought? As a former smoker celebrating 8 years smoke-free this December, I can tell you.

Because quitting smoking is really hard!

And unfortunately, starting smoking is very easy, especially for young, impressionable folks with limited coping skills, or no support. When you’re young that rush of excess nicotinic activation feels like profound relaxation. Calm.

There is nothing that calms you down faster or more reliably than that first drag on a cigarette. Even though the longer you smoke the less good it feels, it becomes a crucial, quick-acting coping mechanism that is extremely hard to replace.

When you try to quit, it’s hell.

It’s like an evil gremlin lives in your mind and never talks about anything except smoking. The longer you’ve been smoking in pack years, the louder he is. Medications like Wellbutrin can help with the gremlin, but as with so many things medical, cost & access are a problem. Besides the gremlin, without medication or nicotine replacement you rapidly start to feel like an insane person. By the afternoon of the first or second day you are grouchy in a way that is almost impossible to control (ladies, think the worst PMS ever) and snapping at everyone.

People who love you and who you love back will literally ask you to smoke. 

That sounds ridiculous, right? Who would do that? Unfortunately, it happens all the time. The first time I ever tried to quit — just a few months after my first cigarette — my boyfriend got so sick of my attitude he asked me to please smoke a cigarette. Up until that moment, I didn’t even know what a “nic-fit” was, but you better believe that at eighteen years old when I heard that the reason I had been feeling like a murderous psychopath all day was simply for lack of one little cigarette, I lit up faster than you can say “No shit?” After all, I didn't smoke that much. I wasn’t really addicted, I could quit any time.

Yes, so dumb, but that's what I thought. via GIPHY

I kept smoking for eleven years and during that time I heard and was told hundreds of times how bad it was to smoke and how stupid it was and oh my gawd how can you stand the smell of it, but you know what no one ever told me?

That the nicotine rush I was experiencing was hypertension.

That every time I lit up, I was inducing a stress reaction in my own body that was intended to prepare me to remain calm while I did whatever was necessary to survive attack.

That this same stress reaction was smashing every bit of cholesterol in my blood into the walls of my arteries with every single heartbeat.

That the reason I coughed was because the tissue in my trachea had adapted to the constant assault of cigarette smoke by literally mutating into a different kind of tissue that couldn’t move anything out of my lungs without the assistance of a cough.

We don’t talk to smokers.

At least, we don’t talk to them like intelligent human beings who can understand & mitigate the consequences of their own actions when empowered with the knowledge all medical professionals must earn/maintain/update via enormous personal and financial sacrifice. We talk to them like losers who already understand perfectly well why they don’t feel good and choose it because god-knows-why-not-my-problem.


Stop telling people smoking kills you. NO SHIT. WE KNOW.

How about instead you tell us HOW to slay the gremlin? How about you take the time to explain to a smoker who may come from a family with absolutely no energy or resources to spare toward wellness because they are just trying to survive exactly what is happening inside their bodies and why it is that "everyone says" smoking is bad.

This is basic Maslow’s hierarchy of needs, and we have all been educated to know better. It is our responsibility as healthcare providers to use that education to help our patients as much as we possibly can, even if we have our own gremlins with nasty things to say about smokers. Step one is admitting the gremlins exist and they are influencing our behavior. Step two is doing something about it. Congratulations on finishing this read instead of clicking away the first time you saw yourself in it. Your step two has already begun.

This content has been edited and supplemented from it's original format here and republished as a blog. 

For more content by Kelly Clark, DPT, PT, MT, visit PT For The People's sister LLC, Patient PT

Saturday, February 16, 2019

Shameless Plug: My Guest Blog on The Pulse

A few weeks back I had the honor of being published to the American Physical Therapy Association student news site, The Pulse.

I wrote a blog about my experience joining the physical therapy profession at a later stage in life than most, and why I think that physical therapy as a profession benefits from the voices of practitioners from all different backgrounds, just as our patients come from all different backgrounds. Check it out here!

Screenshot and Link to Five Things I Wish I'd Known Before Starting PT School
Click to View

Sunday, January 20, 2019

Defining Wellness Disadvantage

Wellness Disadvantage:
A complex set of interrelated factors that combine to confer a lesser likelihood of objective health and wellness for a given patient.

I was having lunch with a fellow healthcare professional when they asked me if I remembered how much a certain patient weighed. It was at an inpatient facility, so weight was a standard metric the appeared at the top of most of the documentation. I replied that I thought it was around 450 pounds. To this the colleague replied, “Is that all? I really thought it would be more.” I had a feeling I knew where the conversation was headed and made a neutral comment about height and laying in bed making it difficult to guess at patient weights. A moment passed and then came, “I just don’t understand how a person lets that happen.”

When I first started physical therapy school in 2016, I felt very intimidated by my classmates. Most healthcare providers use BMI as a shorthand method to define a person’s size and, often, relative health. A BMI of 25 or greater is considered overweight, but in defiance of U.S. obesity trends, perhaps five or six of the 42 people in my class were clinically overweight.

By contrast, I was class III morbidly obese and the heaviest I had ever been, despite having successfully lost over 100 pounds ten years prior. During that decade of seemingly relentless weigh gain, I moved to a new state, quit smoking, lost my father, switched jobs twice, and went back to school full time to get a professional doctorate.

Both despite and because of changes and progress in other areas, I had put on over a hundred pounds since my personal fitness peak at 26. 

Of course, it wasn't 100 pounds overnight. The first time I decided I needed to do something about my growing waistline in 2008, I was only up by about 20 pounds. Between 2008 and starting PT school in 2016, I tried diets, fasting, running, consulted three different doctors and two psychologists, and went through one prolonged but ultimately unsuccessful bout of attempting to accept myself as I was -- but nothing made a difference as year after year my weight slowly climbed. Expert after expert encouraged me to lose weight as a seeming panacea for all my problems, but after all the time and energy I had already dedicated to simply trying to stop gaining weight, I felt deeply hopeless.

During that first, worst semester of PT school in the August heat of the Midwest, I became soaked in sweat walking to classes from the parking garage. My ankles had started to swell every day and I couldn’t wear most of my shoes. Everything from finding a desk that I could fit inside to completing the functional movement screenings during labs to walking from class to class was hard for me, and the consensus was that is was because I was unnecessarily carrying at least 100 pounds more, on average, than anyone else.

As I watched my classmates going through the same brutally long days of professional school -- all of them young, most of them thin, many of whom ran for miles every day, and one of whom had been at Olympic training camp as a triathlete only months before -- I didn’t resent my classmates for their athleticism. I knew they had earned it with hard work and discipline that I could only goggle at --but it was impossible to ignore that as far as getting through my day-to-day was concerned, I was at a serious disadvantage.

Post-class, pre-workout swelling lines
During winter break at the end of 2016, I decided that despite how impossible it seemed I simply had to do something about my health. Though I felt deeply ambivalent about believing that my weight was the origin rather than a symptom of all my problems, I committed to losing weight mainly because it was the only solution to my health problems on offer. I joined a nearby fitness facility where one of my more athletically-inclined classmates worked out. I downloaded MyFitnessPal and started tracking calories. I made a calendar to track the days I exercised and met my calorie goal. I set a goal to drink a half ounce of water for every pound I weighed and worked up to it until it felt normal. I took unflattering, mean-girl selfies at the gym and made before/after Pic-Collages when I hit milestones. I put pictures of my thinner self on the refrigerator and in the edges of all the mirrors.

I ground out 25 pounds of weight loss like my life depended on it, because by then it felt like it did.

After I started working out, my feet and ankles were no longer content to simply swell every day, and instead they ached constantly, deep in my bones, keeping me awake at night. Despite of my weight loss, my blood pressure had recently climbed to 140/90 at rest and my blood sugar still hovered at it’s elevated, pre-diabetic A1C of 5.6. My face was bright red any time I was moving or the slightest bit nervous, and my skin had started to break out unpredictably. I was getting discouraged, but felt determined to keep trying. 

Fortunately, in the summer of 2017, I got a new primary care provider and was finally diagnosed with two common vitamin deficiencies – B12 and D3 -- that were causing my most painful, debilitating, and frightening symptoms – including two falls I could not explain except to say that I had been walking and then suddenly falling.

These problems might have eventually rendered me unable to walk if my physician hadn’t taken the time to listen to me and try to understand why I felt so poorly at such a young age. 

Now I take a few vitamins every morning and I feel like a normal person again. I haven’t lost all the weight yet, but I’m down 45 pounds overall and still working on it. I'm happy I lost it, but I'm still mad so many people I trusted to know better tried to tell me that it was the cause of all my problems.

Though my weight was a pretty obvious source of unhappiness and stress on my body, losing it never would have made me feel any better because it wasn’t the source of the problem.  

Thanks to all the calorie-counting, I have a pretty solid answer to the question "How did this happen?" when it comes to chronic, avoidable, and grossly neglected health problems; because I once wondered how on earth I let it happen to myself. Though the difficulties I faced in locating an empathetic health care provider were an enormous factor in my long illness, I still spent a very long time blaming myself and my own lack of self-control. Once, in an effort to quantify my own seeming negligence in managing my weight, I once calculated how many calories I would have had to consume over the span of a decade in order to gain a hundred pounds.

100 pounds of weight gain
3500 calories
350,000 calories

350,000 calories
10 years
35,000 calories per year

35,000 calories
365 days
95.9 calories per day

96 extra calories per day is all it would take. 96 calories – less than a single pat of butter – can turn into 100 pounds and morbid obesity. As I watched my colleague shake their head, baffled at how a 450 pound patient comes to be, I had to make a decision about what I would say. How does one communicate this complicated concept in an empathetic way?

How can I help my fellow healthcare practitioners understand and help morbidly obese patients when so often the conversation stops with that shake of the head?

I took a few moments to talk to my colleague about how difficult it can be as an obese patient to get help with healthcare problems when admonishments to lose weight so often replace medical advice long before they reach an inpatient facility. I did not say anything about what I silently suspected was underlying disdain and disgust toward the patient (and thereby, unbeknownst to them, myself). I knew they were a professional and would never overtly show those feelings to a vulnerable patient. But what about the messages those attitudes might communicate to a vulnerable patient nonetheless?

Even when said silently to oneself, to ask “How did this happen?” without seeking any specific answer is an admission that one doesn't really want to know. I have heard variations of that question on the lips of many and more types of healthcare professionals than I care to discuss, and almost all of them are directed toward patient populations whom I view as disadvantaged. From a provider standpoint, patients with morbid obesity, patients who smoke, patients with metabolic disorders like diabetes,  and those who admit to alcohol and drug abuse all appear to be ignoring obvious solutions to their health problems, and healthcare professionals often can’t even guess why because they can’t relate.

I can relate because I’ve been there. I’ve been morbidly obese. I was a smoker for eleven years. I was pre-diabetic. I grew up in a rural area with limited access to healthcare. I know the answer. 

It happens because a 60 billion dollar weight loss industry can buy enough influence to ensure that a whole lot of people with no reason or experience to tell them otherwise believe that maintaining a healthy weight is something that is hard to do and requires them to do odd, difficult, expensive, and often painful things.

Not everyone grows up with the advantage of a mother who is there when they get out of school to give them a ride to soccer practice or a snack or help with their homework. Not everyone lives in a smoke-free home or knows how it feels to breathe clean, clear air every day. Not everyone has easy access to modern healthcare facilities, safe schools, or clean drinking water. Not everyone can just lace up their shoes and go for a run in their own neighborhood. Personal wealth, access to support systems, geography, ability, family history, representation, race, religion, language, nationality, gender, class -- these are the factors that lead to some people having an advantage when it comes to wellness, and some having a disadvantage.

The differences that lead to health inequity and wellness disadvantage aren’t insurmountable. Healthcare providers want to help their patients be healthier, and patients want to feel better and be able to do more with their lives. If patients and practitioners alike recognize the deep complexity of the differences between well and the unwell, we can begin to work together to ensure everyone has an equal chance at health and happiness.