I've written this before, but it's always hard. Remembering the fear, the mistreatment, and limited answers naturally brings on the adrenaline.
As a person with pain I face judgment. As a pain psychologist I also face judgment. By outing myself to fellow professionals I risk dismissal of what I have to say, after all, I'm "one of them!" In some pockets of the medical and psychological professional community, outing my chronic pain can mean facing stigma, classification, biased interpretation of my character and behavior, and actual discrimination. Personally I have faced judgment where someone has made assumptions of some ridiculous psychological origin of the pain, about being weak, boundary-less, hypochondriacal, covert messages that if I still have pain I must somehow be incompetent to manage my own stress, and overt accusations of somehow wanting this, wanting to be sick, or wishing this upon myself!
Yes, I'm one of the millions who live with chronic pain, but like the rest of us with chronic pain NONE of these stigmatizing judgments fairly assess me, my life, or my pain.
Outing myself online as a pain psychologist I also face being judged as "one of them, part of the system perpetuating the stigma." It changes how people interact with me and limits my ability to seek support in online support forums or with in-person groups.
However, I believe despite these risks that it's important to speak up, fight for change, and, in an effort to pay-it-forward, share my story. So with the potential risks/benefits clearly understood, I'll proceed.
I never set out to be a pain psychologist, and, of course, I never thought my future would be filled with the topic of pain. I never thought I'd have to talk to my children about Mommy’s pain or for pain to be a regular conversation in my marriage.
I have a condition that fuses the bones of my body, creating bony spurs that swell joints, destroy discs, and grow together. When the bone spurs start, the attached tendons and muscles spasm and swell in response. It can strike anywhere in my body, any time. It gives me daily anatomy lessons on all the places our tendons attach to our bones. It's rather unpredictable, playing a game with my attempts to make sense of the patterns. The condition is called undifferentiated spondyloarthropathy, but it's not supposed to be this aggressive or happen in women much.
The temporary spur growths are incredibly painful, and yes, they cause lasting damage. My latest imaging shows I've blown out 4 discs, which explains why I'm so much shorter. Four of my thoracic vertebrae are bone on bone. Several of my ribs are fused to my spine and sternum. One collarbone is permanently dislocated because of the bony overgrowth fusing the first rib to the sternum. It's in my feet, knees, hips, ribs, chest, throughout my spine, and jaw. I'll probably be classified with ankylosing spondylitis, but for now my SI joints don't show enough damage.
The path to diagnosis was a mind game, with juxtapositions of belittling, patronizing, invalidating, and biased interactions contrasted by caring, compassionate, data-minded interactions. At the time I was unaware of the cultural stigma of chronic pain. I knew I was often being mistreated, but I sadly internalized this, believing that I was doing something wrong. I questioned what was wrong with me or with the way I asked my questions about the symptoms, tests, or diagnoses. What was wrong with me that was eliciting the harsh judgments?
I want to acknowledge that these diagnoses are not easy, I have no judgment about the tests run, the time it takes, or diagnoses considered. Even a painful and scary vertebral biopsy was worth it in the end as they were able to definitively rule out what they feared most - bone cancer or bone infection.
All of this happened in the middle of graduate school. I was studying health psychology, but didn't work in pain. What I had seen in pain psychology felt like it confirmed my internalization of the stigma - that this pain was somehow my fault. Everything I read alluded to a failure of managing stress, some forgotten/unresolved trauma, that I just shouldn't be worried about the pain and if I was worrying I was being a bad pain patient, and that I needed to hide the natural winces and grimaces because it makes other people uncomfortable with my pain and I was inflicting other people with my suffering. I could glean bits and pieces of strategies that seemed to help relax me, but I didn’t understand how that could help my pain. I hadn’t yet been introduced to something called 3rd Wave therapeutic interventions, other than hearing bits and pieces of the excitement about them.
So I plowed forward, as one does in grad school, trying my best to pretend I was normal, that I wasn’t painfully fatigued or struggling to sit in those horrendously hard and awkward chairs. I tried a variety of prescription and nonprescription NSAIDs, but after a few ulcers this wasn't an option for long. I could try other DMARDs or anti-tnf-alpha meds, but they appeared to have limited evidence for helping my condition and the risks didn’t make sense for me (risks for cancer, which runs in my family, and risks of infection, which was high due to living in the germ fest known as having small children). So my doctor and I agreed these treatments were not on the table right now. We never talked about opiate medications, I was too ashamed to even ask. I also knew if I was going to be able to stay in my chosen career I needed to keep clear headed and I am a person who gets very loopy with opiates. Let’s be clear, though. I am not for or against medication management of pain or related health conditions. If it works for you and the benefits outweigh the risks, then please continue. I’m not a zealot about meds or med-free pain management. I am a zealot, however, for each of us in pain knowing all our options, exploring the real risks and benefits, and making informed decisions that are not based in fear, shame, or embarrassment.
Thus began my quest for self-management. I felt alone in this quest! I didn't know other people with pain. I reached out on-line and found the pain community at that time perpetuating the cycle of stigma - telling each other what “we needed to do” (usually selling some quick fix fad), defeatedly decrying there was nothing that helps, or putting each other down for trying things in a different way. The worst I found was statements that argued, "such and such treatment worked for me, if it doesn't work for you then it's your fault."
I withdrew from these groups and turned to what I knew best, science. I began by applying the scientific method to my own experience, trying to find patterns in the chaos. I discovered that certain foods caused a definite increase in pain, my worst culprits were MSG, specific alcohols, and bananas, of all things. Avoiding these helped, but did not cure my pain. I found that staying still helped momentarily but hurt worse the next day. I found that Tai Chi was my friend, but regular styles of yoga were not as friendly to my pain. I found that stress did hurt, but I was actually quite adept at managing stress. I found that if I took acetaminophen daily my pain was worse when it wore off. This was all really helpful, but the pain was still debilitating and caused significant agony.
It was encouraging to feel like there were things I could do that had a real influence on my pain, but it wasn't enough.
I continued to explore through science. There wasn't much I found useful in the beginning, but I soon learned I was just looking in the wrong places. Because I wasn't satisfied with an over-psychologized explanation of pain I started to seek a richer understanding of the biology behind the experience of pain. I started to read the studies from basic science – microbiology and neurosciences. It was in this literature that a path to pain mastery started to become clearer for me.
Then I came across a study by Irene Tracey and colleagues from the UK. She showed how attention can change brain activation patterns and that the people in the study reported a change in their pain! The study surmised that the brain activation and reduced pain were due to our internal opioid system (endogenous opioids). I couldn't stop talking about this study - I still can't stop. For me this opened up a world of possibilities, opportunities to genuinely make my pain less! Since then the science has been exploding, each new study varying the methods giving me more and more inspiration for new biological tools.
But as they say, "knowing is half the battle." Having this knowledge gave me so much hope, but just knowing what I found helpful and what I didn't find helpful did not change my pain. Changing my pain took some practice. Practicing new biological pathways, helping my body and my brain learn that this is my preferred way to feel, these are my preferred brain pathways for processing the pain (sensation only minus the agony circuit), to activate anti-inflammatory systems to keep the autoimmune disorder in check, to train the vagus nerve and shutdown the negative effects of stress, to readily be able to cut down the pain intensity whenever I wanted, without a prescription, with the same real effectiveness of opioid medicines, with a lot fewer side effects. For me one of the greatest tools was teaching my body how to dilate blood vessels, warming up those muscles that have been in spasm and massively reducing that pain that comes from the muscle guarding. When this body system was effectively managed I learned just how much of my pain was the bone pain and how much was muscle pain. I was very surprised.
Do I still deal with pain? Yes! But now instead of daily intensities of 7's and 8's I am usually in the 2’s or 3’s. Not bad for someone with active bone spurs in all major joints and a bone-on-bone spine. And sometimes I actually forget I have a pain condition. When that happens I am always in shock when I realize it. And honestly, unless it's new pain (like from a burn or injury) it's just not bothersome at all. I still get flare ups. Interestingly these do follow patterns of stress and poor self-care (hey, sometimes I like take-out Chinese food, too, and the flavorful MSG that comes with it – at least now I am making an informed choice).
As a psychologist I cautiously began sharing these ideas and biological tools. Fearing pushback I still pushed forward, but gently. Amazingly instead of pushback, this method has received a warm welcome! In addition to my own experience mastering pain using these methods, hundreds of patients in our clinic have benefitted now, too. So many have benefitted now that the referrals are flowing and we face longer wait lists to serve people with pain. We keep trying to expand the clinic to meet the demand, but we can't keep up. Now we have a new problem, not enough hours in the day to see everyone who wants to learn these skills. This was the motivation for building this website, to share this method with anyone who wants to learn. Not to make a buck, not to sell one more thing, but to honestly and genuinely share a new approach that helps those of us in pain help ourselves.
This is my story. This is where I am at. I’m so much better. My pain is now manageable. I have so much more energy, vitality, and happiness. I am filled with memories of gratitude and satisfaction getting the privilege to witness others become masters of their pain. I’m not cured. I’m not perfect. I don’t always make the best choices for my pain, but day after day I practice new ways to change pain, both within my body and in the ways people with pain are treated.