Nearly two years ago, my husband and I left home for a skiing trip, excited and hopeful for carefree days on the mountain, and a much needed escape from our everyday routines. We never expected the life-altering changes we were about to experience.
You hear about high-speed collisions on the slopes, but don’t anticipate being involved in one until you are. Mine was horrific. The immediate agony of the traumatic brain injury and the damage to my cervical spine was treatable, and offered me a glimmer of hope. The physical and emotional pain that continues to haunt me, however, has proved most harrowing. It often feels like I’m suffering through it alone, and that solitude has been one of the toughest aspects to bear.
Chronic pain is a complex condition. It is triggered physically, but is influenced by a number of psychological, social, and environmental factors. For some of the estimated 50 million Americans who experience it, the pain lasts a few months. For others, it can persist for years.
There are more new cases of chronic pain in the U.S. every year than there are for diabetes, depression, and high blood pressure, and nobody has yet cracked the code on how to treat it. The approach varies from person to person, but most treatments rely solely on medications like prescription pain medicines, muscle relaxers, over-the-counter painkillers, antidepressants, and occasionally, injection treatments like nerve blockers. More holistic, long-term pain management treatments like physical and group therapy exist, but they’re an out-of-pocket expense for most Americans. There is little guidance beyond what you get in an exam room.
Living with chronic pain is like being locked in an attic. It is a helplessly isolating experience. Enduring physical suffering every moment of every day leaves you fatigued and paralyzed with fear – fear that you’ll move the wrong way, that you’ll exacerbate symptoms that already feel like they can’t get much worse. Fear that you’re on your own.
And for the most part, we are. People experiencing the fears, anxieties, and utter loneliness associated with chronic pain must fend for ourselves with limited support from the healthcare system – even if we have supportive friends, family, and loved ones. Whenever I try to explain what I’m feeling to friends and family, I know they are listening. I understand they want to support me. The disconnect in experience, however, is too sharp to provide much comfort.
So, we seek help elsewhere. Unfortunately, that help is not always healthy, as evidenced by the complex relationship between chronic pain and substance abuse. The road to recovery is riddled with gaping pitfalls. It often feels like one decision can send us spiraling. We need wider-reaching care and support, and too many of us aren’t getting it.
Extending the system to reach those living with chronic pain
As I continue in my recovery, I’ve found myself desperate for interaction with those who share similar experiences living with chronic pain. Every few months, after the injections wear off and I begin to spiral into a dark relapse, that desperation is multiplied. I’ve spent an ungodly amount of time on YouTube watching people tell their stories, and hours sifting through internet forums, just to find others who deeply understand what I’m feeling in my body and in my mind.
I’ve come to rely on independent pursuits for treatment. There is no long-term support from healthcare professionals. I never know exactly which specialists I need to see, and they’re seemingly never available when I need them. Just last month, during a particularly horrid relapse that put my entire life on pause, I was told my neurologist wouldn’t be able to see me for three weeks. For someone in chronic pain, three more weeks of dark rooms, of unbearable fear, sadness, and despair is torture.
People living with chronic pain shouldn’t have to crowdsource their care from the internet. A community of people with shared experiences is a comfort, but we also need qualified guides – clinical experts who can coach us through every step of our recovery, wherever we are, as the pain can happen anywhere and anytime. We need qualified resources who have a record of our care and can help us get to the right specialists. Most approaches to pain management don’t provide this.
But they can – and they should. Chronic pain is not an isolated condition, and should not be treated as such. Those of us living with it every day need support and resources beyond appointments, procedures, and medications.
Most healthcare organizations understand this, but they’re locked in a supply-and-demand ratio that puts their providers at a supreme disadvantage. There aren’t enough clinicians to provide services in the face of growing demand for care; they simply do not have the capacity to provide the wraparound services people need to stay connected to their care without straining the system and compromising quality.
It is possible to change this paradigm by digitizing some facets of care. Essential wraparound services like coaching, community, and navigation can be delivered digitally, enabling healthcare providers to reach more people in need and keep them connected to their care and recovery. I’ve got a phone, a computer, a tablet – why can’t I get what I need at home?
General wellness digital therapeutics – products that treat general anxiety disorder, depression, and even chronic pain – seem the best place to start. Currently, few general wellness digital therapeutics are deeply integrated into the healthcare system. They’re making an impact on health, but they’re completely detached from clinicians who want to use them to track their patients’ progress and intervene if necessary.
I’m still seeking the resources I need. I look at non-pharmacological approaches like digital therapeutics as having the potential to give someone like me living with chronic pain everything I need to make a healthy recovery: access to digital treatments and clinicians, to community, coaching, and navigation services. It could fundamentally transform chronic pain treatment. It could save lives.
Original Article: (https://medcitynews.com/2023/12/moving-beyond-medicine-to-treat-chronic-pain/)