I never knew which made my back until I broke it. It turns out he did it all. It helped me stop, sit down and stretch. He helped me walk and run. But now a disc was going up to my spinal cord, sending chills down to my tail and toes. My whole body tensed, an elastic band stretched to its faltering limit.
I was 20 and my expansive life suddenly shrank in my bedroom, barely bigger than a bathroom. Sitting in a car could be distressing. A staircase looked like an impassable wall. It hurt so much to walk to the bathroom that I often peed on the sink in my room. At worst, I couldn’t even get out of bed, although it hurt so much to just stay there. My physical shackles also locked me out of my social life. If my friends were not kind enough to come to my room and take pity on my pathetic existence, I would never be able to see them. I ran out of friends quickly.
Even though my room was small, I couldn’t take care of it, as my back caught my attention all the time. Not only did he trap me in a claustrophobic physical space, but he also imprisoned me at a time when I didn’t want to have anything to do with him now. The pain lasted every second I lived, making every micro-decision arduous, making every day feel like an eternity. As much as I wanted to escape my agony, I was locked in place as the pain undermined all the joys I could experience.
Like prison, chronic pain can move away from a person’s community. Many patients try to correct this loss of social support by seeking medical help. “Sometimes people come to the health care system looking for this, but they’re likely to be disappointed,” said Drew Leder, an anthropologist who suffers from chronic pain. “Insurance companies do not reimburse emotional support. It can leave someone very unknown. “
Finding a diagnosis of chronic pain is the only way to shorten the sentence. While a diagnosis can help with treatment, it can provide the person in distress with something even more coveted: meaning. And yet, the nature of chronic pain means that, far from being an ally, for many people, the health care system becomes both an antagonist and a disease.
We can have entered the era of big data, but to understand the experience of those who live in pain, the gold standard is still a good old qualitative research. To analyze what we know about what chronic pain has caused to people, the UK’s National Institute for Health Research (NIHR) funded a metaethnography, a collective analysis of what patients with musculoskeletal pain suffer from. The researchers examined more than 300 studies, selecting 77 to summarize the report. With more than 200 pages, the report is an essential dissection of this disease and the people who suffer from it.
The researchers identified five issues that define the struggles of patients with chronic pain. The first two, the struggles to assert themselves and to rebuild themselves over time, were a direct function of this disruptive disease. People with chronic pain struggle with a body turned rogue and threatening to evaporate their identity. Illness breaks their sense of time, leaving them paralyzed in the moment, unable to plan for the future or to be spontaneous.
What is more devastating is that the next three struggles identified by researchers (building an explanation for suffering, negotiating with the health care system, and demonstrating legitimacy) are toxic side effects of modern medicine, the doctors it has trained, and the health systems. has been propped up. Far from providing relief, the medical system can leave many with chronic pain worse than before.
There is no force that pushes us into introspection like pain. The person in pain, as I know from experience, is hypervigilant, focusing on every turn their body makes and every surface that touches their body. This hyperconsciousness can be incredibly heavy, and can often fail, causing a rumor about every pain, every floor.