Demographic and Clinical Characteristics
Sample characteristics are summarized in Tables 1 and 2. Participants completing all aspects of the study were 13 young women aged 26-34 (11 White, 2 Black). Half the participants were married and living with spouses, and six had children. Most (71.5%) participants had earned a bachelor’s degree or higher, and 64.3% of the sample was working full-time.
Twelve participants (80%) currently met the 2010 American College of Rheumatology criteria for a FM classification.28 On average, they reported low-to-moderate levels of pain (3.4/10) in the last week. Over half of participants (57%) were utilizing healthcare services at the time of study completion, including physical therapy (n=3), psychotherapy (n=4), and other services such as massage therapy or chiropractic services (n=5). Four participants were taking medication for pain management, and 7 were taking medication for mood symptoms.
Thematic Analysis
Our iterative coding process yielded 53 initial codes, each capturing participants’ distinct experiences. These were distilled into a smaller collection of codes which best reflected themes representing resilience and risk. Resilience themes captured aspects of participants’ personal attributes or life experiences that enhanced their ability to cope with JFM, whereas risk themes encompassed factors which interfered with participants’ ability to cope with JFM. The final codes, risk and resilience themes, and exemplar quotes from participants are displayed in Tables 3 and 4.
1. Resilience Themes
1.1. Learning to live with FM by embracing a growth mindset
Participants shared that learning to effectively cope with JFM required gradual adjustments to their daily lives and goals which unfolded over the course of many years. This process was “a trial and error period of seeing what did help outside of medication.” For many participants, one key to managing their symptoms was learning to advocate for their needs in personal relationships and with medical professionals, and seeking a more supportive provider/health care team if they did not feel comfortable with their current provider/s.
Participants reported that, with time, living with FM helped them practice self-compassion and shift their thought patterns and beliefs to move toward greater acceptance of their circumstances as they matured. “[I’ve found] patience for myself and for other people around me.”Many participants also described an enhanced ability to extend empathy toward others. “I think I’m more sympathetic . . . and have a little more patience.”
Other participants described finding benefits in “small” things, including becoming more attuned to their bodies. “It took a period of 6 months to a year of me just exercising regularly to understand: OK, have I really caused a flare-up, or am I just uncomfortable? This process of adjustment took years with many small incremental changes over time.
1.2. Managing JFM holistically
Managing JFM required exploring an array of treatments. One participant stressed that “just prescribing pain medication wasn’t the answer.” There was agreement among participants that managing pain required a holistic approach that considered relationships among pain, mood symptoms, and lifestyle. One participant appreciated a health care visit where they received such an explanation, stating that “The thing I remember most from that meeting is they did describe the cycle [of pain], and they drew on the white board: mental health, depression, sleeplessness, appetite, and pain. And they’re like, ‘they all correlate to each other, so if one is off balance, the rest gets affected.’”
While participants’ ability to achieve “balance” to manage JFM was highly individualized, participants agreed that addressing both mental and physical health was critical. Participants who received mental health treatment as teenagers indicated that they benefited greatly from hearing healthcare professionals describe the mind-body connection. “The therapist really helped me realize that it doesn’t matter if I resent my body. It’s still my body, and I’m still going to have to make it work.” Other participants found engaging in frequent physical activity to be beneficial. “It wasn’t until I went to college and started running and exercising and managing my pain in a different way that I actually felt like a real person again.”
1.3. Perseverance
Many participants expressed resolve to continue living their lives in the fullest despite the limitations of JFM. This seemed motivated by internal convictions and a refusal to give up in the face of hardship. Multiple participants used similar expressions to communicate the possibility of living a meaningful, productive life despite pain. “[JFM] is not a death sentence. There’s going to be work to put in, but don’t fight it… Seek support and help. It’s going to be overwhelming at first, but once you get a handle on it and see what works for you, just keep doing it and stick with it… You can get out of life what you want to put into it. Just knowing that you’re going to have to try a little harder than everybody else does. Don’t let that define you.” When asked for advice they would give to others living with JFM, many participants again expressed internal resolve. “Let them know that they can still lead a normal [life], or the life they would want to live.”
1.4. Social support and validation
Participants reported an extended time spent looking for an explanation for their symptoms, but without a “name” or clear diagnosis. Many sought additional opinions from medical professionals and underwent an array of medical tests and procedures before receiving a JFM diagnosis. Receiving confirmation that their symptoms were recognized in medical nomenclature provided a sense of relief for many participants. “I was more excited or elated [to be diagnosed], because I knew there was something. It wasn’t just me.” Much of this relief stemmed from the validation that others believed their symptoms were real. “It was a little bit of a relief to be – like somebody actually said, ‘I’m acknowledging that you’re in pain a lot.’ And that it wasn’t something I’ve made up to get attention.”
Participants also reported gratitude for the validation received from loved ones and their emotional and instrumental support. “My husband wanted to be an exercise physiologist, so he started writing me programs that would be manageable for me.” Other participants emphasized the importance of familial social support. “I always had family I could fall back on.”
2. Risk Themes
2.1. Unequipped to deal with the long-term, complex nature of FM
Participants uniformly stated that adjusting to their FM diagnosis was a taxing process that unfolded over many years. For some, acceptance of their diagnosis was a process in and of itself. “I think for me, for my goals and aspirations, [FM] was a diagnosis that didn’t fit into what I saw myself doing in the future.” Once they acknowledged their diagnosis, it seemed like it was easier for them to begin the process of adjustment.
Many participants disclosed that they experienced depression, social isolation, and difficulties with peer relationships as teenagers. Some endured these challenges without seeking treatment, which may have prolonged their suffering. “I was severely depressed. I felt very alone. I didn’t know how to cope.” “In high school, [FM] kind of made me not want to go to school.” “I felt really lonely as a teenager, since I was the only one I knew who had this.” For some, the pressures of their educational and vocational pursuits may have interfered with attending to managing their FM symptoms. “[In college], I was more in a phase of grin and bear it. Plus, dealing with the mental stuff…I had a lot of things to distract me from [accepting the FM diagnosis].”
Some participants did not recall learning about how nonpharmacological strategies could help them manage pain, fatigue, and mood symptoms. “It wasn’t until college that anyone sat down and talked to me about [non-drug] pain management strategies.” There was consensus among participants that fatigue, anxiety, and depressive symptoms were underemphasized by providers, and they felt they had very few tools at their disposal to manage these aspects of JFM. “If you develop FM, you will get the depression, and the anxiety. [I would tell providers to] let them [patients] know and maybe guide them to help them a little more. Because I just got the, ‘Oh, here’s your fibromyalgia.’ And that was it.”
Participants reported that they did not fully understand that their symptoms would persist and could impact their lives once they became adults. “It wasn’t until I was about 28 that I started to be like, ‘Ok. This is obviously going to be with me for the rest of my life.’” Some participants suggested that the burden of their symptoms may have lessened had they been equipped with knowledge about the multi-faceted nature of FM in childhood. “I think because I neglected my FM diagnosis for so long, [seeking proper treatment] took me years… Like, not until this year did I seek mental health help. If I had acknowledged my diagnosis earlier, I might have sought that help a lot earlier.”
2.2. Inadequate support and stigma
Many participants shared about a perception that important people in their lives – including peers and medical providers – viewed their diagnosis as fraudulent or attention-seeking in nature. “You look young and normal. Nothing is wrong.” “…You miss a lot of school and whatnot, and people start looking at you like you’re kind of crazy.” Many participants also emphasized the impact of stigma on their vocational prospects and employers’ perceptions of them. “[Employers] just think you’re lazy. They don’t listen to your explanation.” “[It is] incredibly frustrating, and almost demoralizing, to have to justify my pain to [my boss].”
Symptoms of FM also interfered with participants’ personal relationships. Many participants felt, and continued to feel, isolated from others due to their symptoms. “I got to a point where I got too exhausted to really have friends.” Unfortunately, even when they were with friends or family members as young adults, participants reported feeling like they were a burden and felt a great deal of guilt. “I was so dependent on everyone. There was so much pain. I wasn’t able to keep myself distracted because I couldn’t do anything, to the point where I couldn’t even care for my son.”
2.3. Negative healthcare experiences
Many participants perceived that their healthcare was negatively impacted by some providers’ dismissive attitudes towards their symptoms and questioning their motivations for seeking treatment. “You’re just using this as a catch-all to not deal with the individual issues you’re having. We don’t believe [FM] is a real diagnosis.” Some also believed that many providers lacked specialized knowledge about treating FM. “My doctor didn’t really understand how to manage my condition, because he really didn’t understand it either.” Participants often heard the message that they just needed to take medication or “exercise more” to manage symptoms, though these treatments failed to sufficiently address the mental health and fatigue aspects associated with FM. “For basically all of high school, it was, ‘You have this disease. You’re going to be in pain pretty much every day for the rest of your life. Here’s some Cymbalta. And that was not super helpful, especially to a teenager who has so much else going on, too.” Finding healthcare professionals who were knowledgeable about treating JFM was often difficult but highly valued when participants were able to connect with the right health care team.