Championing the Voices of People With Lived Experience in Chronic Pain Research: Tom Norris’ Journey

Retired U.S. Air Force Lieutenant Colonel Tom Norris has lived with chronic pain for 37 years. Medically retired from the military, he struggled to find effective treatment. “When I was being treated in the Air Force, the doctors had no idea what chronic pain was. Their recommendations for treatment were medications, medications, and medications,” he recalls. Over the years, he tried nearly everything—opioids, physical therapy, alternative treatments—but found that managing pain required a personal approach. Today, Norris is a “pain warrior,” leading local pain support groups, promoting health system change, and empowering individuals to be in the driver’s seat as they navigate their journey toward effective pain management.

Norris has never been one to remain silent; he speaks up about his needs and now helps others living with pain find their voices. After leading support groups for nearly 27 years and helping hundreds of people, “I decided it was time to go beyond the grassroots organization and support that I was providing and really make my voice and the voice of others with chronic pain heard,” Norris reflects.

Through his involvement with the NIH HEAL Initiative® and other efforts, Norris is focused on ensuring that research about chronic pain includes input from people who experience it firsthand. “I want researchers to know that people with pain are people too, and they have a valid voice in the process of working toward managing chronic pain, the definition of pain, how to cure pain, if that's possible.” He believes that people with pain must be active participants in shaping solutions. “What I've seen is we spend a lot of time working to make professionals more proficient, but we don't put the same kind of effort to educate people who have pain on the process and how to be a better pain advocate.”

The NIH HEAL Initiative has empowered Norris to educate other people living with pain about research, so they can play an active role in creating a new model for research—one that puts them at the center of it. “When patients are educated, supported, and heard, they can move the needle forward—not just for themselves, but for everyone living with pain.” Norris emphasizes that pain is a deeply individual experience—how pain affects one person may not affect another person the same way, and what works for one person may not work for another. There’s no “one size fits all” in pain, and researchers should take that into account when they’re planning their research.

At nearly 75 years old, Norris is committed to breaking down barriers for those who will come after him. “I figure my role at 75 almost is to break down some barriers. I know the voice of the people with chronic pain is very important. I know it's not heard as much as I think it should be in all aspects. What I'm hoping is that I can barrel down those roadblocks and make it easier for the next person.” 

Watch Tom Norris’ full video interview.