Breaking Barriers: A Chronic Pain Journey from Research to Warrior

August 7, 2024

By Stephanie Godward, Communications and Marketing Director, College of Arts & Sciences

Josie Timmons is using her research on women living with chronic pain to fuel an ongoing personal mission as a Fibromyalgia Warrior, as she lives with the condition while advocating to break the stigma and uplift the voices and experiences of others who remain doubted or unseen.

Josie’s journey exemplifies resilience and the power of shared experiences to educate society about the reality of living with chronic pain, which often feels invisible. Despite the profound impact on her life and relationships, exacerbated by a lack of awareness and lack of support, Josie persevered through dark periods marked by intense pain and thoughts of self-harm and suicidal ideation. Her determination led her to share her story and support others with conditions like fibromyalgia through her research and work in the community. She continues to seek current information and best practices to manage her condition and help others in similar situations.

“With proper accommodations, education, a strong support system, and proper management of the condition, you may not live a quote ‘normal’ life, and it won’t always be fun, to put it lightly, but you can still live a life, and experience joy, and experience love and support,” she said.

A nontraditional student, Timmons' academic path began with a sociology degree and a burgeoning interest in Women’s and Gender Studies, which evolved into a double major. She graduated in 2014 from the undergraduate program, and completed her MA in Women’s, Gender, and Sexuality Studies in May of this year, focusing her research on 11 interviewees living with chronic pain conditions.

Initially dismissive of her own symptoms, doctors provided little relief or understanding for Josie. This dismissive attitude, unfortunately, is all too common, as Timmons discovered through her research interviews and personal experience. Attending a fibromyalgia support group, she found a community that understood her pain and validated her experiences, inspiring her research even more.

“That was a pivotal moment for me,” she recalled, as during her first time sharing with the support group, she felt understood in a way that she had not previously. “You never understand what it’s like to live in chronic pain, unless you experience it. We are in pain 24 hours a day, seven days a week, 365 days a year, and the pain and energy levels are always shifting, so you never know what your ability will be from day to day, or even hour to hour, and that seems like such a difficult concept for those not in pain to grasp.”

Today, Josie is now the leader of that same group: Kentuckiana Fibromyalgia and Chronic Pain Support Group.

“The constant questioning by others of my lived experience and the experiences of the members of the support group fueled my research, and I focused on the stigmatization that is attached with invisible disabilities, especially chronic pain and fibromyalgia. Interviewees echoed each other’s experiences regarding being viewed as exaggerating their symptoms, or as being labeled ‘hypochondriacs,’ ‘attention-seeking,’ or ‘drug-seeking’ by medical professionals, family members, and friends, when in reality, these patients are often at their wits end and crying out for help,” Josie said. “Through my research interviews, I found that there are some professional doctors who still call this modern-day women's hysteria. This is simply unacceptable. Without recognition and treatment of the condition, it’s perpetuating the suffering of those already in pain.”

Her applied project aimed to combat the misunderstanding and dismissal that chronic pain sufferers often face. Through her graduate program applied project, she organized a symposium, "Fibro Warriors Speak Out: Deconstructing the Stigmatization of Fibromyalgia and Chronic Pain," which brought together medical professionals, support group members, and community members to share insights and validate the reality of chronic pain.

“I believe that people must come to the table in order to enact real change within our community. It's such a misunderstood condition, and because we don't have a physical indicator that shows people that we are disabled, then a lot of people kind of doubt our lived experience. As one of my interviewees pointed out, there is so much empathy for someone with cancer, but very little for those living with chronic pain.” Josie said. “I really wanted to focus on combating that stigmatization and work to uplift the voices and experiences of people who live with this condition, specifically women and nonbinary people, in my research.”

One interviewee shared a story in which she had an accessible parking placard on her car, and she went into a store and came back to find a note on her car that said, “This is for people who are truly handicapped.”

Her research also revealed the profound impact of chronic pain on individuals' lives, from disruption of paid work and academic pursuits to loss of significant others and strained personal relationships. Participants in her study shared deeply personal stories, highlighting the need for better support systems and recognition of their experiences.

One poignant quote from another interview encapsulated this: “There was a while ago when I referred to myself as a ghost because I felt like I was just haunting my previous life and not actually living it.”

Research participants also reported an immense loss of sense of self because of the disruption to their lives and independence, with some experiencing such profound pain that they were unable to take care of their personal hygiene needs, depending on parents or friends for assistance. Josie’s research also highlighted the importance of support animals in the lives of people living with chronic pain.

“Some participants spoke of their pets as a vital part of their support system. For example, one person had a dog and said that their dog not only cuddles them when they're in pain, but also inspires them to get up and get out of bed to get exercise to take them walking,” she said.

Looking ahead, Timmons hopes to continue her advocacy through writing and potentially organizing more events to educate and support those affected by chronic pain. She also dreams of reviving her Community of Warriors organization, a project she started before graduate school to create a supportive and inclusive online space for women. Through her work, Josie Timmons embodies the spirit of a "fibro activist," dedicated to raising awareness and fostering a sense of community among those living with chronic pain. Her journey is a powerful reminder of the strength found in solidarity and the importance of giving voice to those often unheard. For more information or to join the support group, visit the Kentuckiana Fibromyalgia and Chronic Pain Support Group on Facebook or e-mail josie.timmons@louisville.edu for more information.