Women’s experiences of ‘being diagnosed’ with a long‐term illness

Abstract

T . ( 2 0 0 1 ) ( 2 0 0 1 ) Journal of Advanced Nursing 33 (5), 594±602 Women's experiences of`being diagnosed' with a long-term illness Aims. In this paper we share women's storied accounts of`being diagnosed' with a long-term illness. The purpose of the paper is to raise awareness of health professionals that receiving a medical diagnosis is a potentially calamitous event, challenging self-identity. Background. The three authors were involved in three separate inquiries which explored women's experiences of living with illness. The authors realized that`being diagnosed' was a common memorable event for the women across the inquiries. The literature around receiving a diagnosis was scarce.Design. This paper is the result of secondary analysis of data from three different projects where we researched women living with long-term illness. In this paper, we focus on the experience of`being diagnosed' as we share and show women's perceptions of receiving a medical diagnosis. Findings. Receiving a medical diagnosis of a long-term illness was a memorable event in the women's lives. Many women felt alone with their illness, often without adequate information to ®nd meaning in the relationship between their familiar self and their new identity as a woman living with illness. They felt vulnerable and lost as they tried to understand the meanings and consequences that the diagnosis held for their present and their future. Informational needs may be speci®c and individual. For many, receipt of a diagnostic label was momentous and should not be underestimated, despite the initial feeling of chaos, many women felt validated. Conclusion. Receiving a medical diagnosis is one event where health care professionals could be on standby. It is important to take the woman's articulation of the event seriously. Open, genuine communication, with willingness on behalf of the health professional to listen would be af®rming for women who are coming to terms with the diagnosis of a chronic illness.

Supraventricular Tachycardia and the Struggle to be Believed

“…Like the SVT patients in this study, hearing the name of the illness was a tangible detail that patients could refer to and use to pursue potentially curative treatment. 43 Participants offered promising and helpful details for health care providers to embrace in caring for SVT patients. Our data support previous findings that SVT episodes become more frequent and severe over time, 48 underscoring the need for realistic patient education counseling including the natural course and illness trajectory work associated with the dysrhythmia and efficacy of drug and ablation treatments.…”

The Impact of Culture and Sociological and Psychological Issues on Muslim Patients With Breast Cancer in Pakistan

“…For these women the journey to diagnosis was a transforming event that can cause many women to develop anxieties about the diagnosis and trepidation about the proposed incurable nature of breast cancer and possible imminent death. 23 This fear was also intertwined with anxieties associated with receiving chemotherapy. 25 Fear and a lack of knowledge caused women to hide the breast lump from their husbands and families.…”

“…For many women, shock is a common response to the diagnosis of breast cancer 6,23 and can petrify a lot of women, leading to turmoil, emotional chaos and the need to reorganise their lives to maintain control. 6,24 For many women this led to difficulties acknowledging the importance of the diagnosis 23 or failing to 'take much in' at the time of diagnosis. This was followed by the expectation that they were expected to cope with complex treatment cycles that were rapidly implemented.…”

“…This is a common reaction to breast cancer. 6,23 This response was often supported by husbands and other family members such as in laws and parents. The lack of acceptance of the diagnosis led many women to refuse treatment for periods of up to two years after the initial location of a lump.…”

‘I don’t feel like a diabetic any more': the impact of stopping insulin in patients with maturity onset diabetes of the young following genetic testing

“…Another patient kept insulin at home even though she had not needed to use it in the seven months she had been taking sulphonylureas: Medical diagnosis carries meanings of illness that can shape an individual's identity and may be difficult to relinquish. 11 Those who had accepted the need for continual insulin treatment found it hard to believe it was not required; after many years on insulin it was months before they could fully accept that tablet treatment was effective.…”