We can end stigmatization by making fibromyalgia visible together

Today a woman with fibromyalgia called my office frantically searching for legal guidance. In the midst of a contested divorce, Julie (not her real name) was experiencing fibro flares exacerbated by a car accident two weeks earlier. Earlier that day, she was seeking a delay from the court for the divorce proceedings while she recovered. After explaining that she had fibromyalgia and was in more pain since the accident, the judge asked her, “How did you get to court?”

“I drove.”

“Since you were able to drive, and you look just fine to me, I deny your petition to delay the divorce proceedings.” And the judged closed her case, changing her life forever.

Through her tears on the phone, Julie told me what she had wanted to tell the judge. “Your honor, I didn’t sleep last night because I was afraid if I used my prescription sleep medication, I’d sleep through my alarm to wake me for this hearing. And then I drove here two hours early and waited in the parking lot so that I wouldn’t be late. I am not able to defend myself and cannot afford an attorney to help me with the divorce.”

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 debilitating and life-altering 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 work 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. 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 making it visible. Your voice matters. Please join us in a Together Walk near you or support a virtual walk. Thank you.