Post #2 in the series "Reprocessing Chronic Pain"
To figure out where you need to go, it can be helpful to understand where you've been. So, my efforts to end chronic pain now -- 32 years after its origin -- rightly begin with the story of how it all got started. The through-line, which should emerge here, is stress and distress becoming associated with (and forming a feedback loop with) pain. For me and for millions of other chronic pain sufferers, the pain has an exogenous initial trigger. But once the body heals from that trigger (an injury, an infection, a medical procedure) chronic pain is fueled and perpetuated by the body's stress response. The stress response is a set of physical/biochemical reactions that take place immediately and automatically where there is an experience, a sensation, a thought, or a feeling that the brain interprets as threat. (My favorite book on the biology of the stress response is Robert Sapolsky's Why Zebras Don't Get Ulcers).
I'm going to pause here for a hugely important message, one which I will continue to repeat. Pain is NOT, ever, "all in your head." All pain is a real physiological phenomenon that can be documented by brain scans. Historically, the term "psychosomatic" has been used to dismiss pain patients as liars, fakers, attention seekers, or "just" anxious, depressed, or stressed. We don't "bring this on" ourselves. But -- and -- pain IS a complex and subtle dance between brain and body. It's frequency and intensity are influenced by thoughts and emotions. The term being used in neuroscience now is psychophysiological (which actually means literally the same thing as psychosomatic, "soma" being the Greek word for body). But it lacks the stigma and connotation. Words matter, even when they are synonymous.
My pain experience actually had two different "starts." The first was a minor car accident when I was 19. My boyfriend and I were on an icy highway in an old car with lap-belts but no shoulder belts (if my memory serves it was a late 70s-era Dodge Dart that looked something like this). We skidded on the ice and rear-ended a truck. I was thrown forward from the waist. Luckily (it seemed) neither of us was injured. But the accident totaled the Dart, cancelled our romantic getaway, and abruptly -- jarringly -- ended the relationship. That's a longer story, but it was a fraught and painful experience that I never really got to process. It's likely that the trauma of the accident and subsequent pain, and the trauma of the lost relationship, were linked in my subconscious.
Several days later I developed stabbing pain in my lower back. Some rest and a round of physical therapy resolved the pain and I went back to living my life. I finished college and moved to Washington DC to start a job. I was active and athletic. After a year and a half in DC, I decided to go to grad school for a PhD in history. It was a dream, a calling. (I'd toyed with the more practical and conventional move of going to law school. I even worked in a law firm for a spell. But I hated it). I loved nothing more than to read and write and talk about big ideas. Penn granted me a full-tuition scholarship plus a stipend for living expenses. I moved to Philadelphia full of hope and excitement.
I loved school, loved the people, the work, the whole thing. I was totally in my element. I felt like I had finally found my people. On the other hand, I was living alone for the first time, in a strange city, in a horrible apartment. (My mother later told me that she cried the whole way home after dropping me off there). There was 24-hour noise from a fraternity house next door and a threatening neighbor upstairs with big dogs and an even bigger sub-woofer. I was unable to sleep for months. There was a serious crime wave underway in the neighborhood with daily muggings and a high-profile murder of a grad student. I was in a long-distance relationship that I sensed was doomed. Yet I frequently traveled back and forth to DC to see him. And the grad school workload was intense; the pressure and competition were high.
I vividly remember sitting on the sofa in that wretched apartment, alone, reading for a class, and feeling the familiar ache in my back. I ignored it. Over the following days and weeks it got worse, became more of stabbing and burning. It radiated down into my left leg. Sitting was what brought it on and it wasn't going away. I began to panic. Being a graduate student involved constant sitting. Sitting in class, sitting to read, sitting to write. So would my planned career in academia. I was studying to be a professional sitter, and the longer I sat, the more it hurt. The more it hurt, the more scared, frustrated and discouraged I got.
But I wasn't going to quit. So for two years I read lying down, stood or kneeled through my classes, and spent a fortune on chairs and pillows so I could sit at a computer (yes we had computers back then. Anyone remember WordPerfect for DOS?) It sucked. I wasn't able to go out, sit in restaurants or bars, or hang out with friends. I moved out of the horrible apartment into a house with two roommates, which was a huge quality-of-life enhancement. One of my roommates bought me a plastic lounge chair so I could hang out in the living room and read in a semi-comfortable position (bless you Tim Hacsi). I spent a LOT of time in that chair. Then, the summer after my second year of grad school, my parents convinced me to consult a fancy New York neurosurgeon (don't get me started on New Yorkers and medical care). Dr. McMurtry promised to make it all go away. "Eight weeks from now," he said, "you'll have forgotten this ever happened." He was wrong. Dead wrong. Irresponsibly wrong. First, the post-surgical recovery was horrific. No one had warned me about or prepared me for that. (Why do surgeons omit or downplay how you're actually going to feel after surgery? I was 26 years old. I had NO idea what I was getting myself into. Maybe because no one would agree to have surgery?) After about 6 weeks in bed, the surgical pain and the acute nerve pain subsided, but I was left with muscle and soft tissue pain from my legs to my shoulders. Dr. McMurtry wrote me a prescription for Valium and then stopped returning my calls. I went back to my lounge chair and back to standing/kneeling through 3-hour seminars. I did not acknowledge or process the trauma of that surgery until decades later. (I've since become very interested in medical trauma - I think it's a huge, silent epidemic and I've seen it in every client I've ever met. But I digress).
By sheer force of will I finished grad school, including 3 years spent writing a 300-page dissertation. I began a career. I got married. We bought a house and had two kids. We had an active social life along with two full-time careers. The pain was there, always. And so was the fear and frustration. I just didn't let it stop me. I also didn't really share what I was going through with anyone else, aside from my family. It was too important to show a strong, happy, and competent face to the world. I feared and rejected the stigma of chronic pain, of disability, of fibromyalgia (which I was diagnosed with at some point. That is whole other story - the medical stigmatization of "syndromes" and those who suffer with them). I tried every treatment, conventional and alternative. It got better and it got worse, but it never went away. I pushed through.
Everything I did was flavored with pain and fear. Work. Maintaining a home. Socializing. Caring for babies. That's one of my most painful memories. Parenting with chronic back pain is a whole other level of agonizing. Of course you choose your child over yourself - lifting, holding, carrying, bathing, and changing them. It's just what you do. But my body was screaming. I was lucky that both my kids were good sleepers and my husband took sabbaticals when each of them was born. We had access to high quality childcare. It could have been a lot worse, and I'm sure it is -- and has been -- for other parents less privileged than we were. And, it makes me deeply, tragically sad to remember those difficult, early years of their lives.
What's more, I now understand that putting pressure on myself and being critical of myself, two skills I excelled at, also send messages of fear and danger to the brain. It was a picture-perfect set-up for "neuroplastic" pain. (See Alan Gordon's his book The Way Out or his website https://www.painreprocessingtherapy.com/. Also the work of physicians John Sarno, Howard Schubiner, and many others).
Pushing through pain, denying or ignoring it, and over functioning in spite of it, is a recipe for disaster. It is never the right answer. It took twenty years, but the reckoning came. My body finally said no, to borrow a phrase from the brilliant physician and author Gabor Maté. In his book When the Body Says No, he argues that when we push ourselves too hard, ignore the body's warnings, make time for everything and everyone except ourselves -- i.e. when we don't set limits or say "no" -- the body eventually says "no" for us, producing pain or illness. It's a desperate attempt to get our attention and it forces us to slow down and take care.
When my body finally said no, things got much worse before they got better. Two more injuries, another herniated disk, two more disk surgeries, and finally a 2-level spinal fusion. I was still searching for a structural cure and the doctors told me this would work. The fusion did stabilize my lower spine and cured the sciatica. (Sciatica, thankfully, has never come back. In the annals of chronic pain, sciatica is its own kind of horrible. It's utterly disabling).
I also I lost my job, went on disability, and was largely homebound for two years. Oh, and I went through a divorce and moved out of my house in those years. Our kids were 9 & 12. Yeah, I know, you can't make this shit up.
The pain persisted. The good news is that the life I created from the rubble of my old life is much more authentic, rewarding, calm, compassionate, satisfying, and happy than my old life. So if it's possible to be grateful for a traumatic experience like mine, I'd say I am.
This story felt like important context for what is to follow. But remembering it, reliving it, retelling it, only serves to reinforce the pain-fear cycle. So from here on, I'll be focusing on the "reprocessing" part of Pain Reprocessing Therapy (PRT) - namely, creating a felt sense of safety in my mind and body, learning to observe pain with neutrality, and easing up on the self-pressure and criticism. I'm learning to stop scaring myself all the time. Though it's not an easy process, and it's by no means linear, the experts say to stick with it and "trust the process." There is no way to do this except to go "all-in." So here goes my leap of faith.
In case you missed it, you can read the first post in this series. You can also explore my earlier blog posts on chronic pain and food and body image, going back to 2019.
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And please forward this to anyone else you know who is dealing with chronic pain, chronic illness, or anxiety.