I’ve worked with people in pain for more than 10 years, and recently, I got to really understand the lived experience of this disease. It’s been a painfully beautiful lesson in acknowledging some of the missing pieces in how we help people with pain.
So, I went and got myself sciatica. A beautiful text book case, like I ordered the “perfect” specimen. When it arrived, it came with the burning leg pain, the weakness and the falling over in the street, the knife-like stabbing pain in my butt and the general fear and misery that goes with this common affliction. Nerves get inflamed, and wowsers, it’s not a fun thing. The crazy part, this is MY disease, this is pain, this is what I read about for fun, and have worked with professionally for more than ten years. I was Explaining Pain before it was cool, but my own pain? Wow, did I learn some stuff. If experience is the best teacher, now I can really appreciate how much there is still to learn, and that care and compassion is an ideal accompaniment.
How Did it Happen?
My left leg has felt a bit weird for a while. I had sat listening to my yoga teacher for an hour on New Year’s Day, and then I couldn’t walk the next day. I blamed the fact that he was talking about “Dating your Inner Self” and like hell I’d want to date that crazy lady. I wrote it off as just another existential crisis, and like any good clinician I ignored it. I toddled off to the San Diego Pain Summit, and realised that I couldn’t really do the fun little games that Ben Cormack was getting us to do play with for retraining people in pain. Long haul flight? Must be the reason, although my left side got progressively crankier throughout that week. I came home to Shanghai, I went straight back to work and normal life, walking was getting a bit slow and difficult but hey, I’m tough and I don’t stop. Some of us are gifted with a neocortex that makes some dumb decisions, and pain is only one protective mechanism. I had a weak feeling leg, I had hamstring muscle guarding and I had numbness in my foot. I didn’t have any pain, until I had ALL the pain. I don’t remember when it started, but the feeling of having to stop and rest when out walking, the pain in my butt that could put me on the floor in tears and the unstoppable burning in my leg are not something that I’m ever going to forget. I am grateful for a strong and unreactive immune system, because coughing and sneezing were just not something I could do for six weeks.
Why did it Happen?
In any experience, we search for a “why” to explain the events that unfold. Stories and narratives are how we make sense of ourself, and our place in the world. The hard things was, I couldn’t really put it together and make sense of the story. I live in China, so the first thought is always “you’ve got cancer”, because you never know what you’re exposed to in the environment here. I’ve been gifted to have a pretty amazing and resilient body — it’s been through some rough training in mountain biking and adventure racing, various eating disorders for a lot of my life, overwork and undersleep, and hasn’t really complained at all. People have often asked me why I am so committed to working in chronic pain when I don’t have it, and up until now, I couldn’t really answer that question. In hindsight, it was intellectual fascination with an abstract concept. Pain was something that was a positive — thrashing myself on my bike, not eating, endurance racing with no sleep, “all nighters” — these were a place to move forward, and the pain was worth it. This pain was not. This pain was attacking me, and stopping me from doing anything that mattered to me. I had more pain than my patients, and I started to resent them for that. Every positive comment I made to them, reinforcing their improvement, reminded me that I was not getting better. Every phone call to my boyfriend had me in tears, and him both frightened and frustrated that he was thousands of kilometres away. This pain reduced me, the superhuman me, to a victim and a passive participant in a scary and confusing experience.
Let’s step back and remember that I thought I knew a lot about pain. I work with people in pain everyday, and always start my sessions (and proudly, I have for a long time) with stories about the person’s perceptions and understanding of their condition. We embrace the messiness of the biopsychosocial perspective, and we unpick the threat and the danger associated with sensations and meaningful activities. We find places that things can move better, physically and with a whole person life perspective, and we practice patience, attention and awareness to how we move forward. Things get better. I could not apply ANY of this to myself. I went to a physical therapy colleague, hoping for some better understanding or explanation, I just got more pain. I went straight to the surgeon, hoping to leapfrog some time and waiting around, and end this thing quickly. I had the MRI and got the wonderfully nociebic email back about my “HUGE disc bulge” and did I want surgery sooner rather than later? I wanted my Mum, I didn’t want to be in China, I hated my patients for being better than me, and I really had to dig deep on “what do I do for people that come to me like this?” Cue the professional crisis of “nothing we do as Physiotherapists even matters” because at this stage, I couldn’t sleep more than a few hours (lying down was an aggravating position) and no amount of clever “core stability” exercises was going to make a difference. All those things about mood and memory changes, and isolating yourself from people and catastrophisizing — I did them all! The pain experience was no longer theoretical.
What did I do about it?
We will have pain when there is more credible evidence of danger than safety. I had a pretty good understanding of that. I knew I didn’t have an acute traumatic event (but I did have a long history of using my body, which can be seen on my MRI), and I didn’t have any bladder/ bowel dysfunction indicating that I needed to have something fixed in my body. This should have helped me to start to understand the other mechanisms at play, right? I wish. Hilariously, even if you professionally tell people about the neurobiology of pain for a living, somehow I didn’t think it applied to me. In my head, my pain was “different”, and all that evidence didn’t apply to me. It was my disc, and I even went so far as to (sooo painfully embarrassingly) attempt to explain to Lorimer Moseley, Pain Research Hero, that my pain was clearly biomechanical and Imust have a nerve lesion or some kind of “double crush” injury, and that I’m not sure it will ever get better. I hope Loz and I are still friends after that one! I did notice that my pain was better around friends, or if I emailed the unfailingly brilliant Joletta Belton for a few wise words. I went to acupuncture, more for the idea that I was “doing something” rather than sitting around focussing on it, and after realizing that it truly was doing nothing, I could get back on the stationary bike. I had an epidural steroid injection, a painful and scary experience that I never want to repeat, and that I do think made a difference to the pain. I was fortunate to have access to Dr Kal Fried, Mr Pain Literacy himself, and fellow disc bulge buddy (who was cycling in the Pain Revolution, with no problems at all!) who used both his professional experience, personal story and boundless humour to get me back on the high road. Even when you know about pain, the low road is so easily taken.
Where I got stuck (and how I got unstuck!)
What Dr Kal did for me, and what I do for others, is create a context of safety. We read about this in the plentiful resources of Explain Pain and other texts. In practicality, it’s very challenging to create it for yourself. To be able to present your story, your theories, your fears and your worries to another, and have them consider them under the lenses of science, experience and human kindness, is something of enormous value. I needed help, and I’m not used to that feeling. I can conquer and fix and make everything better, all by myself. Until I couldn’t. People ask me why I am also so interested in vulnerability, and Brene Brown’s writing and research. In the same way as I was intellectually fascinated with pain, in some way it’s that I don’t get vulnerability at all. I cheer the “vulnerability is not weakness” tagline, and have no mental structure for it. When I have to ask for help, I am at my worst. I come out with teeth bared and fists swinging, there is no way I want you to see that I don’t have this all under control. I apologise to the people that have tried to help me through this, pain is never “just” pain!
Where I am, and where I am going
I can swing a kettlebell again! I can sweat more than I have pain on the stationary bike. I have left running for the next goal (but I am boss on the elliptical trainer), and it’s something to work towards. The pain sensation is still there, and it makes me have to pay attention to things that I didn’t think I needed, such as sleep, rest and play. The “superwoman” idea runs deep in this one! I don’t have any burning pain, I still have some night pain, I can put my shoes on and my neurological weakness has resolved. I bought my hiking pack back to China with me from Australia, because Adventure Girl has been shoved to the back of the life priorities shelf for too long. I am gingerly doing some graded exposure to hamstring stretching and forward bending, and broadening the modes and ranges of motion in which I move daily. I am on the fence with yoga, although I love it for the focus and discipline, there is a nagging part of me that doesn’t want to go back in to that environment of self judgement and comparison with women that have waists the size of my legs. That’s a definite feeling of not safe, and as I write about it, there’s my leg pain! As David Butler would say, “DIM’s (Danger in Me) hide in hard to find places”.
Pain has stopped being an intellectual fascination, and has switched over to being a powerful calling. Although I slipped and stumbled all over the place in working out how to look after myself, I had a long understanding of pain to fall back on. Those people that come to see me in the clinic don’t have that. Usually they have concepts and knowledge that are keeping them stuck, but are the safe places they hang their understanding of their experience on. This experience has shown me that the most important thing that I do in the clinic is to listen and to help people find their own points of safety. To help them create calm from the chaos, and order from the uncertain, and so, like me, they can find their way back to the things that matter to them.
We collect stories from people in pain in this collection, Pain Talks, and we’re looking forward to publishing yours too! Writing your stories down is a good therapeutic process, even if you never publish it! We’re sharing some good pain information with you via PainChats, here’s your invite to join us!