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)
