My heart could feel her anxiety, fear, isolation, and fresh insults. I also knew that she was in serious emotional distress. After talking together, I took a walk for a drink of water and reflected on how often insensitivity and judgment about pain play out in everyday life. This stigmatization is often internalized by the person in pain – by thoughts that they did something wrong, or they are emotionally unbalanced, or they are too sensitive. Stigmatization increases stress and results in higher pain levels with less functionality.
The skin on my back usually feels sunburned. The carefully chosen, padded cushion on my customized office chair and the lumbar support cushion are ergonomic adaptations I need to work at my desk, which is personalized with sawed down legs. Desk lamps provide soft light to work by because the blinds on my window are closed; the sunlight and overhead fluorescent lights tire me easily. Few people know of the extra effort and unconventional adaptations (like Julie’s and mine) that people with fibromyalgia must expend to participate in society and meet responsibilities.
I knew exactly why Julie had stayed awake all night and had driven to the courthouse early. She was being responsible and then presented her best self to avoid the very stigmatization that was heaped on her -- being called a liar about the severity of her fibromyalgia symptoms and told that she didn't look sick. And her impending divorce affirmed the findings by University of Michigan researchers in 20 years of data on 2,717 couples (where at least one of the partners was over 50). They found that not only did 31 percent of marriages involving at least one sick partner end in divorce, but the risk of separation for older couples was higher when the wife, not her husband, was ill.
You’re not alone in your struggles with fibromyalgia. Living with this life-altering condition is very challenging. Judges and officials who create policies and won’t listen to the lived experiences of people with chronic pain conditions, and include their expertise in consideration when rendering decisions and recommendations, are guilty of perpetuating stigmatizations at the highest levels of authority where mutual respect and leadership are expected. Changing American cultural perceptions and stigmatizations about pain must start with its leaders.