I was recently interviewed for a podcast about my chronic pain issues, including how and when
they started, factors that influenced my pain early on, and where I am now. One
of the questions I was asked was how I flipped the switch from being a passive
recipient of care, searching for the answers in my doctors, physical
therapists, movement coaches, massage, and the like, to realizing that in order
for me to successfully change my pain it had to come from within me, that I had
to be an active agent in changing it.
That’s a very good question, and if I could tap into
those elements that could flip that switch, I think I could help solve a lot of
problems in the world! The thing is, going from passive searcher of answers to
active pain changer wasn’t like a switch being flipped for me, it was much more
nuanced and gradual than that. It was more like a dimmer switch going from
darkness to the lowest level of light, allowing me to see a little bit better
but still dim and unclear. In that little bit of light I was able to see a bit
more of the picture, though, and that helped me to move up the dimmer switch a
little bit more, shedding a bit more light, helping me to see more of the
picture, helping me to identify some of the pieces of the puzzle that I could
start putting together. As those pieces started to come together, I could move
the dimmer switch up yet more, shedding even more light on the issues I was
facing and the changes I was going through and as more light shed, eventually I
was there, I had crossed over from passive patient to active agent. Where along
that spectrum I was when that happened, and how I got there, isn’t something I
can readily define or describe, though.
It’s complicated.
That’s one of the hardest things for me to convey to
other folks who are dealing with chronic or persistent pain. That there is a
way forward but that there isn’t a plotted route on the map. But there is a
map, but each of us has to determine the best route to get from Point A to
Point B to Point C and so on. And the map isn’t finite, it’s sort of endless. There
is no destination; it’s the journey that matters.
“Life’s a journey, not a destination.”
~Ralph Waldo Emerson
Though I can’t create a sort of step-by-step guide to
getting to that point where I realized that ‘hey, I’m alright, I can still live
a meaningful, active, pretty damn awesome life, even with this pain’ (boy, how
I wish I could!), I do know the key ideas that helped to get me there. I think
these ideas are likely fundamental for anyone dealing with pain to be able to
successfully change their pain, and perhaps more importantly change the meaning of their pain, so that they live
the life they want to live, the life they can live right now, even if pain sticks around.
There’s a thing about these fundamental ideas I’m
talking about, though, which is true about any new way of thinking or of
understanding the world that we’re exposed to: they’re not always easy to grasp
or believe or incorporate into our lives. New information can be tough,
especially when we’re in pain. Pain has a tendency to usurp all of our
attention, to sap all of our resources, so taking in new information, no matter
how valuable it may be, can be really, really hard. It’s much easier to just be
told what to do or to take a pill or to get surgery than to have to really get
in there and try to understand pain and what we can do to change it. It’s much
easier to be a passive recipient of care.
I was there for a long time. I never took medication
for my pain (that’s a whole ‘nother story), but I did always seek the answers
in someone else. First up it was my occupational doc and second up the physical
therapist the occ doc sent me to. When my pain kept getting worse, third up
became the orthopedic surgeon who sent me to a second physical therapist. Then
up was the second orthopedic surgeon and cortisone injections. Then up was a
third orthopedic surgeon and eventual surgery and my third round of physical
therapists. And when my pain persisted (tnot the debilitating pain I had
pre-op, but pain none-the-less) a year post-op it was yet more physical
therapy, some chiropractic care, some acupuncture, some massage, some
non-medical movement and posture therapy (these last two I paid out of pocket
for, all the others were paid for by worker’s comp).
I saw the greatest success with my movement and
posture therapy, though I understand the reasons for this success much
differently now. It was the first time someone helped me to work through my
fears of movement, the first time someone asked me questions about something
other than just the nature of my pain, where was it, what’d it feel like, on a
scale of 1-10 how intense. In fact, they hardly asked me any questions that
dealt specifically with my pain; rather, they asked me
questions about me, about my life, about my activity levels, and about what I
currently wasn’t able to do that I would like to be able to do. Aha!
They also got me moving in all sorts of ways and in
all sorts of contexts, not just focusing on my hip and the pain there and in my
low back, but focusing on all of me. I finally started to become aware of the
rest of my body, whereas before I only thought about my hip.
I’m sure this laser focus on my hip led to some
distorted body-map images in my brain, especially since it had been my sole
focus for over 2 years at that point. I started to think about how all the
other parts of my body felt, how they were moving, how my body as a whole felt
and moved. This was pretty ground-breaking and, heartbreakingly, wasn’t
something I got from my physical therapists who also only seemed solely focused
on my hip (strength, range of motion, etc).
About 5 months after I started my movement and posture
therapy I returned to graduate school in a Master of Science program in human
movement (kinesiology). During my coursework in school, I started researching
movement and pain. From my years of physical therapy, I very much thought that
my pain was biomechanical in nature. And with the success I was having in my
movement and posture therapy, I felt like there was something to it. My pain
wasn’t gone but at least I could function as a human being. And sleep. Those
were two things I didn’t feel I was able to do for a long time.
About a year after my movement and posture therapy
began I was sort of plateaued. I felt better and was functional but I was still
in pain everyday, I still feared some movements because some movements
exacerbated my pain or made my hip and/or low back make some funny noises
accompanied by odd sensations. They worried me. Quite a lot. I was still very
focused on my posture and would try to control my posture and movement rigidly.
I was worried about damaging tissues, about ‘messing up’ my surgery, about
reinjuring myself.
Then I read some of LorimerMoseley’s work.
Aha! It was truly life-changing for me. I started to actually understand the
mechanisms behind my persistent pain. I started to understand the complexity of
pain.
I started to understand how much our thoughts,
beliefs, self-talk, expectations, fears, anxieties, and worries contributed to
pain. I started to understand how isolation, lack of social support, and
depression can contribute to pain. I started to understand how our nervous
system and our immune systems change in response to continued pain and how
those changes can further contribute to pain persistence, long after the
tissues heal.
I started to see how the stress of the worker’s
compensation system (financial worries, always feeling doubted, not receiving
timely care, feeling as though I had to fight for everything) contributed to my
pain; how my withdrawal from my friends and family and my medical retirement
and loss of identity as a firefighter contributed to my pain; how the uncertain
nature of my pain, which persisted long after my tissues were healed, and the
worry and anxiety that resulted from that uncertainty contributed to my pain;
how my association of pain with biomechanics and tissue damage led me to fear certain movements and continually blame myself for not
moving/sitting/standing/sleeping right and how that contributed to my pain.
I also began to understand that our bioplastic nature
means that changes don’t just take place in response to pain, but that we can
make changes in our lives which can affect our biology, our nervous system
function, our immune function; it meant I could change my pain, my life.
It helped me to prioritize stress management, to start
being more mindful and practice things like meditation, journal writing, self-
and other-reflection, gratitude, and quietude.
It helped me to realize that creative pursuits weren’t
a waste of time, that my writing and my photography actually provided health benefits.
It helped me to get outside more as I realized that my
nature walks and mountain hikes were a form of therapy for me. It helped me to
focus on relationships, on loving and being loved, on being present with the
people I care about.
It helped me to understand that my movement and
posture therapy didn’t work because of ‘correct’ posture or movement, but
because I felt safe moving and I was having fun. And when this understanding
kicked into gear, I made huge leaps and bounds in what I could do
movement-wise. I think the capabilities were always there, I just didn’t tap
into them until this other understanding kicked in. That was huge. That meant I
could still be active, still pursue the things I love doing, still live the
life I want to live, even if the pain was still there.
I didn’t have to wait anymore.
And this realization helped me to accept the pain. I finally understood that I didn’t have to fight the
pain anymore, nor did I have to concede to it or avoid it or try to ignore it.
I could simply acknowledge it, accept its presence, and make space for it so I
could make room for all the other stuff that matters to me because I no longer
had to waste all my attention and resources on the pain anymore.
Acceptance is the most important step in my view, but
the one that took me the longest to get to. It was one of those ideas I didn’t
grasp right away, one of those ideas I didn’t understand and even fought off
for a bit.
This makes sense, early on in pain we’re seeking the
solution, and early on is when the pain problem can most readily be solved (if
I knew all that I know now at the start, who knows where’d I’d be!). But there
comes a time for some of us that those acute pain problems become chronic, they
keep persisting. And if they’re going to stick around, I think it best we
accept that and make some space for it so we can get on with it. You know what
I mean?
That’s why I think the first step in all of this, for
me, was pain science education because it helped me to grasp what pain was, and what it wasn’t. It helped me to understand and
think about pain differently, therefore allowing me to think about my own pain
differently.
Once I understood that hurt doesn’t always equal harm,
that my pain didn’t mean I was damaging myself, I could move without fear or
worry. And not being so worried and anxious about how I was moving or sitting
or standing all the time, I realized I could live without fear and worry. I could socialize again, going out to
dinners or the movies, traveling, and being active, trying different things and
revisiting old things I used to love doing, like trail running.
I could get out and do the things I enjoy again and
just be me.
My dimmer switch is now most of the way up, there’s
lots of light in my life now, but it was a slow process. And it involved a lot
of things building on each other, not necessarily sequentially, either. My
points A and B and C are all over the map and there are no straight lines, there
are lots of squiggles and backtracking and sharp turns.
But that’s ok. Life is more interesting that way.
You can read Jo's story and interesting insights into living well with chronic pain at My Cuppa Jo
