Monica and her husband, David, on their 28th wedding anniversary.
Asking Questions, Finding Hope: The Impact of Avid Study Participation
By Ashley Hattle
Monica Thomas, MA, LMFT, LPC, is a proud, self-described “research nerd” and therapist who has lived with multiple pain conditions since childhood.
Like many with chronic pain, she struggled to get doctors to investigate her symptoms, often waiting years for diagnoses—which eventually included cervical and thoracic myofascial pain syndrome, fibromyalgia, axial spondylitis, chronic pelvic pain syndrome, and TMJ. Seeing one provider after the next caused anxiety, which at times kept her from voicing her worst concerns at appointments—resulting in skewed results and unanswered questions.
“I wanted to quit feeling anxious and get off the diagnosis roller coaster,” shares Monica, 57. So she researched her diagnoses and learned about overlapping pain conditions.
The more she discovered, the more she wanted to be involved.
“I liked the idea of contributing in a way that could help someone else, because pain is a challenge and quite isolating,” she says.
Participating in pain research opened that door.
SHARING INSIGHTS THROUGH RESEARCH
Since 2021, Monica, who lives in Ridgeland, Mississippi, has participated in nearly a dozen clinical trials or research studies. She jumps at the chance when she can, especially if the focus is on one of her conditions or symptoms that’s hardest to treat, such as enthesitis or axial spondylitis.
While her pain hinders in-person participation, she has contributed in meaningful ways to trials and studies through questionnaires, surveys, wearable devices, interviews, and online courses.
Some studies focused on gathering feedback about her experience with a specific condition, while others offered meaningful ways to increase her quality of life.
TRACKING STRESS AND PAIN
The medications Monica tried to treat fibromyalgia were only marginally effective, eventually motivating her to enroll in one of her first research studies—the LARKSPUR (Lessons in Affect Regulation to Keep Stress and Pain UndeR control) clinical trial, funded by the National Institutes of Health at Weill Cornell Medicine.
Researchers set out to evaluate an intervention, offered as an online course, that taught skills such as mindfulness, gratitude, and identifying personal strengths. The goal: to improve stress management, resilience, and pain-related outcomes in adults with fibromyalgia.
Monica completed daily check-ins, providing updates about her emotions and mood. “The questions were useful because they helped me mentally, at least, keep track of what was going on in my life at the time,” she recalls.
Researchers ultimately reported that the web-based skills intervention improved psychological well-being and lowered fatigue and pain in participants.
FINDING NEW TOOLS
Monica also participated in the Stronger Together trial, offered by the Global Healthy Living Foundation in partnership with the Cleveland Clinic. The study, geared toward people with autoimmune conditions, measured the effects of a 12-week online program aimed at boosting the immune system. The program assessed and modified sleep, nutrition, physical activity, and stress management, evaluating quality of life and disease activity.
Through virtual modules, she received articles to read, a sleep log, resources about balanced meals, yoga videos, and stress management exercises.
“I had never done any kind of yoga,” shares Monica, who has continued chair yoga sessions with the instructor after the study. “I hadn’t been introduced to the gut microbiome, so it was very informative and practical.”
This study was particularly meaningful because of the mix of patient education and action-oriented activities. The mindfulness, journaling, and weekly modules kept her focused and engaged.
“I could go back and see strides and improvements that I’d made,” Monica recalls. “I enjoyed it so much I got my husband hooked on working with the yoga instructor.”
While personal results can vary from study to study, she believes that participating in this particular trial was a big win for her health.
LESSONS LEARNED FROM NEARLY A DOZEN STUDIES
Monica has found that research scientists often don’t notify participants of the study’s results when they’re published—but she’s learned a lot from her participation.
For instance, she says, she’s seen fibromyalgia go from a diagnosis no patient wants to have and no doctor wants to treat, to one that pain specialists and researchers are investigating and taking seriously.
“Research helps you feel less alone because other people are doing the study too, and you can have contact with the researchers and ask questions,” Monica shares. “Hopefully, there will be better, more effective pain treatments for people, since there are very few right now.”
She has also developed a better understanding of her own pain. One of her worst symptoms is allodynia, which is pain resulting from even the lightest, normally non-painful stimuli—but she never knew the name of this phenomenon until she read and participated in pain research.
“Just walking in the kitchen, the air hitting my legs hurt, and no one had an answer, but there’s a name for that,” she shares.
In the past, when she described her allodynia pain, medical professionals chalked it up to “pain catastrophizing.” That term, used in research to describe the exaggeration of pain and its negative effects, is often inaccurate and harmful to members of the pain community, Monica emphasizes. But now that she has a name for what she’s experiencing, she shares, “I can say, ‘This is what it is.’”
Research has helped her find her voice in the doctor’s office.
“Having an invisible illness, I can see doctors already assessing me based on how I look, and I don’t look sick,” she explains. But after participating in studies, “I know the terminology to use. I think it has helped me advocate for myself more effectively.”
A FRONT-ROW SEAT TO HEALTH CARE CHALLENGES
Individuals participating in research studies get a unique view of health care. Monica believes that improving chronic pain means treating the whole person—and her research contributions have highlighted areas that need improvement.
More crossover between specialties is essential, she says, describing interactions with “field-myopic” doctors and emphasizing that imaging and labs are only part of the puzzle. She notes the need for more manual testing and visual inspection to assess pain, and comprehensive questionnaires that include the impact on activities of daily living.
Monica wants to see more pain-specific training and licensing for professionals treating mental health conditions that often overlap with chronic pain, such as anxiety and depression. Most of all, she hopes to someday see more humanity and humility among medical professionals through effective collaboration.
She engages in research—and encourages others living with pain to do the same—to help move the medical system closer to these goals.
‘SOME OF MY QUESTIONS ARE NEVER GOING TO HAVE ANSWERS’
Monica’s journey with pain has led her to focus on kindness, acceptance, and a willingness to accept the unknown—drawing on a favorite quote from poet Rainer Maria Rilke, “try to love the questions themselves, like locked rooms…”
Even if the answers don’t come, she says, “I can still find meaning and hope.”
Chronic pain changed the trajectory of Monica’s life. It has cost her friendships and opportunities. She is no longer able to meet with clients in person, after years of working with children and adults as a marriage and family therapist.
Her drive to help others is fueled by the mountain of grief that rises from a lifetime of pain. She strives to stay grounded and hold on to what makes her her—by spending time with her husband, David, and their cats, enjoying gardening and creative activities, and helping others in their community.
She has no plans to slow down in her research participation—she recently applied for a trial studying medical cannabis as a therapeutic for chronic pain, and hopes to take part in a ketamine study at some point to see how that treatment works for her pain.
Monica encourages others living with pain to join studies when they’re able. Staying engaged helps keep pain research—and answers—moving forward.
“Look at what you gain, look at what’s required, and see if it’s worth it in your life,” she says. “We can’t discover if we don’t research.”