Articles

The Key to Health Equity: Multi-Stakeholder Engagement, with an Emphasis on Patient Voices

Everyone seeking emergency care navigates wait times, insurance, and harried medical staff, but for individuals living with chronic pain, an ER trip can devolve into discrimination and gaslighting.

As late as 1980, medical professionals widely believed that infants couldn’t feel pain. When children complained of unexplainable or invisible pain, it was chalked up to “growing pains” or a dramatic, hysterical child—a crybaby.

Anyone who lives with chronic pain—or cares about someone who does—knows that treatment can be complex, time-consuming, and costly. At the start of 2023, the Centers for Medicare and Medicaid Services (CMS) took a major step toward eliminating some of those obstacles when it debuted the first-ever specialized billing codes for chronic pain management in the Medicare program.

When it comes to older individuals living with chronic pain, doctor’s appointments are one of the best examples of the old adage “by failing to prepare, you are preparing to fail.”

The 2022 annual Transgender Day of Remembrance and Resilience was also the day of one of the worst hate crimes against LGBTQ+ people in recent memory: the mass shooting at Club Q in Colorado Springs. Sara Gehrig, who leads U.S. Pain Foundation’s LGBTQ+ support group, knew that the members of her group would be reeling from the news.

When Nathan Neufeld, DO, was 17 years old, he watched his mother die after a long battle with breast cancer. His presence during her death with his father and two younger brothers was a major factor in his decision to study medicine and to specialize in pain management.

American Indians and Alaska Natives, bisexual individuals, rural residents, and people living in poverty are significantly more likely to experience chronic pain, according to recent data released by the Centers for Disease Control and Prevention (CDC).

Managing a chronic pain condition can be a full-time job. In addition to living with symptoms on a daily basis, individuals living with pain must find providers, understand health insurance, attend appointments, pick up prescriptions, make phone calls, pay bills, and more. But if managing pain and seeking health care is complicated and time-consuming for someone with a single diagnosis, what is it like for those living with multiple conditions?

Mental health is often inextricably linked to the chronic pain experience. One aspect of chronic pain that is sometimes overlooked is the mental health of caregivers or care partners. Like the patients they care for, care partners are also faced with mental-health challenges: many share their feelings of frustration, hopelessness, and depression at navigating a broken health care system, compounded by limited sleep and, often, difficulty getting time for themselves.

Almost all people with chronic medical conditions or serious long-term injuries have experienced their pain being dismissed or trivialized. “Medical gaslighting” is when medical professionals manipulate patients into questioning their own experiences.