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

ABSTRACT

Bleeding 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 femininity provide a framework for understanding the sex-specific consequences of bleeding disorders in a disability perspective, and suggest that lack of hegemonic masculine or feminine properties may advantageously be compensated for in life areas that remain unaffected by the bleeding disorder.

KEYWORDS:

• Bleeding disorders
• rare disorders
• disability
• masculinity
• femininity

Acknowledgements

We thank Ingrid Wiig and Susan Jane Sødal from Centre for Rare Disorders, Oslo University Hospital, for useful guidance and clarifications.

Disclosure statement

No potential conflict of interest was reported by the authors.