Why I'm Not Jumping for Joy at Your Idea for Treating My Chronic Pain
I am sure you have an amazing pain treatment/service/product, but you will have to excuse me if I am not jumping for joy.
In the depths of my heart and on the ink on my professional and personal profiles, I think of myself and claim to the world that I am an open-minded person. I pride myself on my willingness to engage with new and diverse people, theories, opinions and possibilities. I see hope, change and light in the dark hole of the trauma, pain and devastation I face every day in my work as a social worker.
This positive, open, hopeful person is impressive. Right?
I have noticed recently (and by noticed I mean someone lovingly slapped me across the face with it) that even though I say I am open-minded, in reality, I am a big stinking close-minded traditional cynic — at least when it comes to medical care and options for pain treatments and management.
My literal and figurative eye-rolling at every well-meaning suggestion for a new “medical trial,” “psychosomatic intervention,” or “innovative, cutting-edge treatment” has apparently become transparent in a way that contrasts with my self-concept, personal values and the persona I believed I was sharing with the world. I am starting to recognize, albeit belatedly, that my cynicism, suspicion and doubtfulness (in this area at least) may be harming my ability to choose and access meaningful treatment options.
Heads up — this is not a feel-good article about the healing power of letting down your guard and opening up to the magic. It is just an honest self-reflection and transparent exposure of the experience of being a healthcare consumer.
Why am I cynical about all of these cutting-edge treatments I am being endlessly bombarded with? The treatments that promise me a better pain-free future? Because I have tried many, oh so many, and they don’t work, or they rarely work, or sometimes work at certain times for certain things. I have experienced improvements and have better days and worse days. But what works? I am not sure I know anymore.
I was thrown into the world of debilitating physical pain in my early 20s, a time when I did not know my head from my ass, or understand the types, effects, impacts and consequences of various treatment modalities or specialties. I was desperate, writhing in pain, and did whatever was suggested.
I tried physiotherapy, orthopedists, neurologists, rheumatologists, surgeries, injections, bracing, pain killers, hydrotherapy, cranio-sacral, acupuncture, laser gadgets, kinesiotaping, traction inversion, Feldenkrais, Pilates, yoga, personal training, swimming, exercise, medical massage, shiatsu, and that Korean guru healer who literally beat my spine into submission. There was also talk therapy, trauma therapy, body movement therapy, breathing therapy, the Sarno method, online support groups and lifestyle changes which include exercise, endless vitamins with lofty promises, diets that ban the best food and vegetables, and prayer, hope, boundaries and social support.
Just to name a few.
I did it. I do it. This is my life.
So why am I cynical?
Because even with all those treatments, life changes, vitamins and drops, prayers and talks, I am still in pain. Every single hour of every single day. And it is hard to know which treatments work, or when and for what they are effective. Pain isn’t linear or singular, and a tiny bit of a difference in one pain area when the rest of the body is exploding feels like a hallucination and a joke. In the grand experience of ever-changing overwhelming pulsing, shooting, collapsing pain, it is hard to tell when there is a change, unless it is a magic pill or someone hits you over the head with a hammer and knocks you out cold.
As a healthcare consumer, underlying it all is the question of how to filter out the good from the bad and the evidence from the marketing. There are endless new innovations to treat pain, innovations worth billions of dollars, dollars that are lovingly lining certain pockets. And yes, many may be successful at treating their desired targets, but as many are brought into the market, their dangers become revealed as well. Pain treatments can have significant consequences like the opioid epidemic, the pain killer that literally killed 60,000 people (I took that one), the heart failures and kidney failures, and the botched surgeries.
These innovations interfere with real human bodies that are using every ounce of their energy they have to live meaningful lives.
When do the risks associated with treatments or experimental treatments outweigh the experience of the initial problems? How do I, the consumer, know who to trust and what medical treatment I can rely on? Which doctors are making money off which treatments? What are their own personal biases against other more successful and perhaps alternative treatments? Do they see the entire patient and not just one specific medical issue, which is needed in order to understand the significance of a medical decision and the impact of risk?
Let’s also not forget that trying new medications and treatments takes significant time and cash money. Treatments are rarely a one-time visit, but rather require a process and numerous appointments over a long period of time. The clinic is usually far from home and work, and the required physical and technical effort rarely synchronizes with the demands of life.
Even though it doesn’t sound like it, I am impressed with medical advancements and high tech innovations. I appreciate how much is being invested in healthcare. I would not be alive or functioning were it not for these innovations. But I have accepted that I am living this life of mine in this world with chronic pain. I work really hard to minimize it. I work really hard to live well and vibrantly with it. But in order to live, I have to surrender to its existence and stop expecting it to disappear. That unmet expectation has led to crushing disappointment too many times. And perhaps it is that disappointment I avoid when I face and automatically partially and cynically block out presentations of new supposed cures.
That being said, pain is a dynamic, evolving, shifting and transitioning thing, and it is this very dynamism that cracks open the potential for hope and change. And because medicine and healthcare are also dynamic and evolving, maybe, just maybe, one day the evolutionary processes will collide and my pain status and the medical possibilities will align, and relief will be possible.
Because of this fact, I don’t have the luxury of complete cynicism or dismissal. So I will listen to your suggestion with both doubt and optimism, because I believe in and have seen and experienced change and improvement, and better days.
This story originally appeared on Light on Pain.
Getty image by Oleg Elkov.