“Who I Am Now, Is More Me.” An Interview Study of Patients’ Reflections 10 Years After Exhaustion Disorder

Abstract

Aim: To achieve a deeper understanding of the patient’s perception regarding individual aspects related to the development of exhaustion, hindering and supporting factors in the recovery process, and potential remaining consequences, 7–12 years after receiving an exhaustion disorder diagnosis.Participants and Methods: Twenty patients previously diagnosed with and treated for exhaustion disorder were interviewed 7–12 years after onset of the disease. The semi-structured interviews were transcribed verbatim and analyzed with inductive content analysis.Results: Three main themes with patterns of shared meaning resulted from the analysis: “it’s about who I am,” “becoming a more authentic me,” and “the struggle never ends.” The interviewees described rehabilitation from exhaustion disorder as the start of an important personal development toward a truer and more authentic self-image. They perceived this as an ongoing long-lasting process where learned behavior and thought patterns related to overcommitment and overcompliance needed to be re-evaluated. The results also convey long-term consequences such as cognitive difficulties and reduces energy, uncertainty about one’s own health, and the need to prioritize among one’s relationships.Conclusion: Patients with exhaustion disorder are still struggling with dysfunctional strategies and functional impairments such as cognitive problems which limit their lives, 10 years after receiving their exhaustion disorder diagnosis. While informants describe some positive consequences of ED, the results also emphasize the importance of acknowledging that the patients are embedded in systems of relationships, in working life as well as in family life. This needs to be considered, together with other aspects, when working toward prevention of stress-related mental health problems.

“Recovery activities are needed every step of the way”—exploring the process of long-term recovery in people previously diagnosed with exhaustion disorder

“…The participants described recurring ups and downs in their well-being over time, which related to both external and internal barriers and facilitators combined with the ability to manage these, causing an ongoing challenge to maintain balance in life. The results are in line with Ellbin et al [ 25 ], where the recovery process from ED is described as an ongoing, long-lasting process.…”

“…In conclusion, this study shows that recovering from ED is a long and ongoing process where setbacks and remaining symptoms are common. This aligns with previous investigations into patients’ experiences of long-term recovery from ED [ 25 ] and we extend those findings by highlighting the importance of viewing facilitators and barriers during the recovery process in the context of individual, relational and contextual perspectives. Our findings further indicate that recovery from ED cannot solely be viewed as a process towards clinical recovery and symptom remission, but rather as an ongoing process that can be understood within the framework of personal recovery; in this context, the ability to accept changes in one’s function and adjust life accordingly were helpful approaches towards well-being.…”

“…However, as expected, personal recovery seemed to be more important as to how the participants managed everyday life. Personal recovery and related conceptualizations of the recovery process such as ‘post-burnout growth’ [ 8 ] and the description of ‘personal development’ [ 25 ], captures aspects of living a better life after ED/burnout due to personal growth and finding one’s own values. The facilitators found in our study (changing workplace, receiving support, a reduction in stressors, changes in the participants’ own behaviors and understanding and acceptance of their condition) overlaps with what has been found to be important factors for personal recovery [ 22 ], indicating that the process of recovery could, at least in part, be viewed as a journey towards personal recovery.…”

“…To date, few studies have examined the qualitative experience of the process of recovery from ED. In a recent follow-up ten years after treatment, people previously diagnosed with ED described that they were still struggling to understand their illness and to take care of themselves, but that they also had gained an understanding about themselves during the recovery process that helped them change their behaviors and act with more self-care [ 25 ]. To be able to be oneself and find time for solitude has also been described as helpful, as well as a supportive environment and being able to balance energy levels during the day [ 26 , 27 ].…”

Characterization of exhaustion disorder and identification of outcomes that matter to patients: Qualitative content analysis of a Swedish national online survey

“…Demographic and clinical data collected from ED-participants through closed-ended questions and symptom questionnaires in the present study indicate a clinical picture that is similar to findings from previous qualitative and quantitative inquiries into aspects of ED (Lindsäter et al, 2022). The fact that a large part of participants responding as prior ED patients still reported significant symptoms is in line with findings from long-term follow-up studies of ED, suggestive of prolonged struggle with reduced energy, cognitive difficulties, and uncertainty about one's health (Ellbin, Jonsdottir, & Bååthe, 2021;Ellbin, Jonsdottir, Eckerström, & Eckerström, 2021).…”