Identity and social challenges for persons with bleeding disorders: a gender and sex comparative approach

Plata S Diesen,Lisbet Grut

doi:10.1080/15017419.2015.1091034

Plata S Diesen, Lisbet Grut

Open Access

https://doi.org/10.1080/15017419.2015.1091034

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Abstract

ABSTRACTBleeding disorders are genetic conditions which involve impaired blood clotting. This may lead to disability. The predominant symptoms usually differ depending on biological sex, which implicates that the disabling mechanisms of bleeding disorders are gendered. Here we review sex-specific symptoms from bleeding disorders and how they can disable gender identities. We found that men's masculinity can be compromized by sickliness, economic dependency and reduced ability to participate in sports and other risk-taking activities. Women's femininity, on the other hand, can be compromized by challenges related to their fertility and cultural misconceptions concerning menstrual hygiene. Both men and women with bleeding disorders experience a general lack of understanding in society at large regarding their unique problems. Women in particular are subject to late diagnosis and disbelief, due to a common misperception that bleeding disorders exclusively affect men. Theories on hegemonic masculinity and fem...

Highlights

IntroductionA common misconception regarding bleeding disorders is that they affect only men
Introduction and backgroundThe term ‘bleeding disorder’ refers to a wide range of congenital medical conditions that result in problems with the body’s blood clotting system (MedlinePlus 2013).A common misconception regarding bleeding disorders is that they affect only men
Many typically masculine sport activities involve rough physical contact which entails a risk of bodily injury (Mahalik, Burns, and Syzdek 2007), which can be harmful for persons with a bleeding disorder

Summary

Introduction

A common misconception regarding bleeding disorders is that they affect only men. Women can experience severe symptoms (Di Michele et al 2014; World Federation of Hemophilia 2012; Wysocki 1998). The aim of this article is to review and discuss the literature on lived experiences of sex-specific symptoms in various bleeding disorders in a disability and gender identity context. Bleeding disorders are rare congenital disorders, the most commonly known being haemophilia, which mainly affects men who inherit it from their mother. Other conditions, such as von Willebrand’s disease and several other clotting factor deficiencies and inherited platelet disorders, affect both men and women (Centre for Rare Disorders 2008). In Norway, a rare diagnosis is one that affects no more than 1/10,000 (The Norwegian Directorate of Health 2011)

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