Unshame the Pain

Chronic pain is a human-rights and social-justice issue

As opioid deaths have continued to rise at a staggering rate, the epidemic was declared a national emergency last month. However, what’s not being talked about are the millions of Americans in chronic pain desperate for relief, acknowledgment and understanding. September is National Pain Awareness Month and I urge our communities to step up.

As a 31-year-old woman with “invisible” musculoskeletal, autoimmune and pain diseases that have disabled me since my teens, I know all too well the misinformation and misunderstandings surrounding chronic pain. I nearly died of liver failure due to opioid overdose in 2007 after attempting suicide because the pain and the lack of effective treatments, combined with demoralizing judgments from family, friends and medical providers, was so excruciating.

According to the National Institutes of Health, nearly 50 million Americans experience daily and severe disabling chronic pain; other studies put the estimate of Americans in chronic pain at over 100 million. But addressing the debilitating effects of chronic pain, a process that physiologically changes a person’s ability to modulate pain, continues to be sidelined.

“Relieving Pain in America,” a 300-plus page report commissioned by the Obama administration, states that “people with chronic pain should be recognized by family, employers, health insurers, and others as having a serious condition.” Yet people in pain continue to be stigmatized, discriminated against and disbelieved , all of which impedes treatment, care and quality of life. People from marginalized groups, particularly women and people of color, confront the greatest prejudices and barriers in receiving treatment and are further marginalized by the disabling and financially devastating effects of chronic pain.

People in chronic pain need access not only to effective treatment, but also to community support and advocacy. Pain is a human-rights and social-justice issue transcending the singularity of medicine, policy or the individual. Truly influencing better support of people in pain requires that individuals and institutions alike make conscious choices to change how pain, and people in pain, are regarded. We can begin with ourselves!

Ma’ayan Simon lives in Sebastopol and writes the pain activism and education blog maayansimon.wordpress.com; she also teaches about pain, disability and intersectional social justice.

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