title: From victim to survivor to thriver: helping women with primary ovarian insufficiency integrate recovery, self-management, and wellness.
abstract: Most women discover that they are infertile in a gradual manner after many failed attempts at conception. By contrast, most women with primary ovarian insufficiency (POI) uncover their infertility as part of an evaluation of other presenting complaints, frequently before attempts at conception have even been contemplated. The most common words women use to describe how they feel in the hours after getting the diagnosis of POI are "devastated," "shocked," and "confused." Clearly, the news propels some patients onto a difficult journey. POI is a serious and incurable chronic disease. The diagnosis is more than infertility and affects a woman's physical and emotional well-being. Management of the condition must address both. Patients face the acute shock of the diagnosis, associated stigma of infertility, grief from the death of dreams, anxiety from the disruption of life plans, confusion around the cause, symptoms of estrogen deficiency, worry over the associated potential medical sequelae such as reduced bone density and cardiovascular risk, and the uncertain future that all of these factors create. There is a need for an evidenced-based integrated program to assist women with POI in navigating the transition to acceptance of the diagnosis, ongoing management of the condition, and ongoing maintenance of wellness in the presence of the disorder. A health-centered approach can gradually replace the disease-centered approach and put patients in partnerships with professional health-care providers. Ideally, the journey transitions each patient from seeing herself as a victim, to a survivor, to a woman who is thriving.
authors.affiliation: Rachel’s Well, 4880 Lower Roswell Rd., Suite 165, #610, Marietta, GA 30068, USA. evelina@rachelswell.org
authors.forename: Evelina Weidman
authors.initials: EW
authors.lastname: Sterling
authors.forename: Lawrence M
authors.initials: LM
authors.lastname: Nelson
mesh_terms: D005260:Female; D006801:Humans; D016649:Primary Ovarian Insufficiency / Q000503:physiopathology / Q000523:psychology* / Q000534:rehabilitation*; D012648:Self Care / Q000379:methods* / Q000523:psychology