How Joining a Research Study Helped Her Cope With MS Symptoms
Jennifer Garrovillas was overwhelmed when she was diagnosed with multiple sclerosis (MS) in 2023. But worse than the diagnosis was the aftermath of learning to live with a chronic illness.
“I wasn’t prepared mentally to face how painful it could be and how exhausted I would be,” she says.
MS is a complicated autoimmune condition where the immune system mistakenly attacks the protective covering of nerve fibers throughout the body, causing nerve damage over time. It affects each person in different ways, though some symptoms, like numbness, tingling, fatigue and weakness, are fairly universal. Most people have symptom flare-ups followed by periods of time where symptoms are absent or significantly lessened.
Garrovillas’s diagnosis came on the tail end of a very stressful time in her life. At first, she thought she was having a stroke, because she couldn’t speak or use the right side of her body. She went to an emergency department in her home state of California, was treated promptly and diagnosed with MS. Though she eventually regained her abilities, she was suddenly faced with the fact that MS is something she’ll have the rest of her life.
“When I was newly diagnosed, I was trying to research anything about MS that would help me, because I was still grieving from the news,” she says.
She started joining research studies conducted by universities, hoping to learn coping strategies. One study she participated in was led by Lindsey Knowles, PhD, a clinical psychologist at UW Medicine. Knowles specializes in rehabilitation psychology and researches behavioral health treatments for common and disabling symptoms in people with MS and long COVID.
The study Garrovillas joined focused on using cognitive behavioral therapy (CBT) strategies to help MS patients manage fatigue. CBT is a research-backed method for learning to recognize unhelpful thoughts and behaviors and to change how you respond to them. It’s often used to help people with mental health conditions like anxiety, but it can also help people manage symptoms like fatigue and pain and improve their ability to cope with those symptoms.
“Fatigue is one of the most common and disabling symptoms of MS, but existing treatments can require a significant time commitment,” Knowles says. “This study tested and refined three CBT-based strategies delivered through brief telehealth sessions to ensure they were practical, relevant and helpful for people living with MS fatigue, while laying the groundwork for a more efficient and accessible treatment program.”
More than any of the other studies she participated in, Garrovillas found Knowles’s study the most helpful. She learned how to navigate through her emotions and identify which ones were making her symptoms worse, and recognized that it’s OK to have negative thoughts and grieving days.
She also learned that she can still do a lot of the things she wants to do, even with fatigue, pain and other symptoms.
“Being in the study taught me that I can choose to have a better outlook, and that really helped,” she says. “I do get flare-ups — my MS isn’t cured, obviously — but it’s so much more manageable now that I have the tools.”
Garrovillas’s experience is just one example of how medical research can improve people’s lives. She participated in the MS study remotely, illustrating the importance of studies that can cross state lines and reach people who wouldn’t be able to participate in person.
“While CBT doesn’t eliminate MS fatigue, it can help people develop practical skills for responding to symptoms, managing difficult emotions and staying engaged in the activities that matter most to them,” Knowles said. “Hearing participants describe meaningful changes in their daily lives is incredibly rewarding and reinforces the importance of making these interventions more accessible.”
Garrovillas hopes other people with MS will be able to have experiences like she did in the study.
“I want other people with MS to know to give yourself time to grieve, but give yourself a time limit, don’t ruminate on it,” she says. “There’s so much more in life we can do and enjoy; it’s not hopeless.”