Of the 16 individuals invited, ten agreed to participate (Eight female and two male, age range 32–72). No participants were excluded, and all provided written informed consent. Four did not respond to our invitation and two others expressed interest but we not formally recruited before saturation was achieved. Nine interviewees had recovered from their frozen shoulder, having been diagnosed within the preceding 2 years, while one was still in the resolution phase. Two participants had suffered two frozen shoulders, affecting each shoulder at different time points, whereas the remainder had only one arm affected. Data analysis resulted in identification of five main themes; the severity of the pain experience, a loss of independence, an altered sense of self, the significant psychological impact, and the variable experience with healthcare providers.
The severity of the pain experience
The intractable nature and intensity of the pain dominated the participants’ experience of frozen shoulder. The pain was severe and the timing unpredictable, although most often precipitated by movement. Participants used vivid descriptors of pain, such as “horrible”, “excruciating”, “debilitating” and “unbearable” to illustrate their experience.
“You see the Western movies [where] they forge the steel and … plunge it into the cold water … that’s what it feels like, hot, molten lava encapsulated by metal, dragging your shoulder down”
The pain affected all facets of life, impacting work, sleep, personal hygiene, interpersonal relationships and independence. The prolonged duration and inescapable nature of the pain made it both debilitating and demoralising. It was consistently recognised that above all else, participants wanted the pain to go away. Pain was the priority and was considered far more significant than the loss of movement:
“All I wanted was for the pain to go away”.
Resolution of the pain had a major positive psychological impact on participants:
“Once the pain was alleviated, then I could cope with everything else”.
Improvement in pain enabled participants to engage more effectively in physical therapies and begin their recovery.
A loss of Independence
The degree and impact of the disability and loss of independence was another prominent theme. There were implications both at home and in the workplace. Activities such as dressing, driving, shopping and personal hygiene were limited, or near impossible for some, occasionally with resultant loss of income. This was particularly evident for those whose dominant arm was affected.
“It's hard to describe how much it limits you. You can't do anything”.
Many participants felt that the severity of their illness and consequent disability was underappreciated by others due to the ‘invisible’ nature of frozen shoulder. Often a sense of stoicism was expressed as people tried to cope as though nothing was wrong, while simultaneously becoming frustrated by others’ inability to appreciate their incapacity. Many struggled to accept their disability, and were reluctant to rely on others:
“I felt like I was abusing my friends … to ask them again or to rely on them again, that was stupid”.
Meanwhile, others exhibited a greater sense of acceptance and self-kindness. There was an apparent sense of fear associated with loss of independence; fear of being judged, of being a burden, of resentment, and of loss of income. This fear was compounded by social isolation and a sense of hopelessness, particularly for those with limited social supports and inadequate access to services.
An altered sense of self
The loss of independence, in combination with intractable pain, prompted an identity narrative reconstruction for some participants, resulting in an altered sense of self. In the context of the severe pain and physical limitation, individuals struggled to meet their own expectations, and also the expectations of those around them.
“I was supposed to be the one that could cope and do everything”
This resulted in a growing separation between their private sense of self and their public social identity, causing a paradigm shift in their self-concept [30,31,32]. Pain was a constant reminder of disability. Their disability prevented them for undertaking activities of daily living, as well as activities that brought joy, such as sport and playing with children or grandchildren. Inability to drive or catch public transport caused their world to shrink. Interrupted sleep caused fatigue and irritability, as well as an inability to function at full capacity at work. The fear of being a burden and lack of understanding from others resulted in social isolation:
I didn't want anybody around me because I didn't want anybody to see me the way I was”
Cumulatively, these factors challenged the sufferers’ perception of self and often resulted in social withdrawal. For some, this altered sense of self was enduring, and in others it was transient. Resilience and strong supportive social networks were recognised as important factors in preventing such a loss in sense of self.
The psychological impact
Living with a frozen shoulder often had profound psychological effects including anxiety, irritability, depression and even the contemplation of suicide. The unrelenting pain, as well as interrupted sleep, were key determinants of mood:
“When the world is crumbling and you’re in pain … it’s a dark time”
Furthermore, patients often felt they weren’t believed about the severity of their pain, with a lack of empathy and understanding emanating from family, friends, colleagues and members of the medical profession. People reported feeling frustrated at their lost independence and lack of understanding from others. This frustration manifest itself as irritability.
“people see me as more cantankerous than they’d ever been seen before.”
Depression was frequently reported.
“I’d had enough, I couldn’t handle it and my depression got really bad”
Two participants had even contemplated suicide as a means of ending their pain.
“had I woken up the next morning … still in the same sort of pain, then yes, I may not still be here”
A lack of recognition of the individuals’ mental health issues by treating health professionals was reported, and may have contributed to the psychological impacts being poorly managed.
The healthcare approach
Medical and allied health professionals often appeared to lack awareness of this condition. At times, this resulted in prolonged delays to diagnosis, inappropriate investigation and inadequate treatment.
“I’d seen 3 or 4 GP’s up to that point and none of them, they’re all sending me off to have an ultrasound for bursitis and no one, and I’d even mentioned frozen shoulder and, and they were all like “No we don’t think it’s that” you know, and so I felt very disempowered from the medical profession and very not understood.”
There were many differing interpretations by the health professionals of what “frozen shoulder” actually meant and why people get it. On reflection, participants became aware of this knowledge gap over time. An apparent lack of compassion and empathy was sometimes noted as members of the healthcare team trivialised the severity of symptoms and failed to acknowledge their impact.
“[They] never ever asked me how things, how was I managing at home”
The severity of the pain was also underappreciated by certain practitioners, as demonstrated by the lack of compassion when asked to perform exercises:
“She grabbed my arm, and she used all her force to pull my arm all the way up, I screamed like you had no idea.”
Participants expressed concerns about the overall knowledge and experience of many of their healthcare providers and suggested a need to improve this through further education. In contrast, participants described a sense of relief when a health practitioner was able to identify and confidently manage their frozen shoulder. The knowledge of being understood provided a sense of relief, and instilled patients with new hope.
“I almost burst into tears. I can feel it now. I was like
Oh my God, someone understands me”
The formation of a therapeutic relationship and established treatment targets was evidently important in the overall healing process.