The Lived Experience of Women with a Bleeding Disorder

The lived experience of women with a bleeding disorder: A systematic review by Sanigorska et al. Summary by guest author Hannah Polley

Hemophilia is often viewed as a condition limited to males, overshadowing the challenges faced by women with bleeding disorders. A recent systematic review¹ looked into the realities of women with conditions like hemophilia and von Willebrand disease. By investigating their struggles, particularly concerning heavy menstrual bleeding, trauma-induced bleeding, childbirth, and surgeries, this study aimed to shed light on their unique experiences.

Women living with bleeding disorders may encounter monthly heavy menstrual bleeding, unlike males with hemophilia who have an average annual bleed rate of 3 when managed through prophylactic treatments. Additionally, women face increased risks of bleeding following traumas, during childbirth, and post-surgery. Apart from managing their personal health, many of these women also shoulder the responsibilities of caring for family members affected by bleeding disorders².

Bleeding disorders significantly impact the health-related quality of life for women. Misdiagnoses, diagnostic delays, and social stigma contribute to their struggles. This review aimed to enhance understanding of how bleeding disorders affect daily life in women by analyzing 28 publications encompassing three key themes: access to care, socioeconomic impact and productivity, and mental health.

Access to Medical Care

The experiences of women with bleeding disorders seeking medical care vary significantly, however many women experience dismissive attitudes from healthcare providers.

“I was just so angry. I was angry with myself, I was angry with them because despite my trying to follow up, people just kept saying this is normal.”

Obstacles to accessing care stemmed from limited healthcare provider knowledge, trivialization of symptoms, reluctance to address gynecological issues, management inadequacies, and gender biases. Diagnosis uncertainties were found to contribute to delayed care. Female family members oftentimes normalized excessive bleeding, making it difficult for women to understand their own symptoms.

Socioeconomic Impact and Productivity

Excessive bleeding, ranging from mild to life-threatening, was found to disrupt women’s engagement in recreational activities, education, and employment. Menstruation was found to hinder social interactions and work productivity, profoundly affecting their day-to-day lives.

“It was hard to be in school. It was hard to concentrate. I used to collapse a lot. I would just be walking down the street, and I would just collapse because I had low iron.”

In addition, most women reported that their bleeding disorder had an impact on their decision to have children or prevented them from doing so, impacting overall quality of life.

Mental Health

Emotions of guilt, self-blame, anxiety, depression, and a sense of inadequacy were found to frequently afflict women with bleeding disorders.

“I had such a guilty conscience because my boyfriend ended up with me who gave him a son with an illness. It was my fault.”

These emotional struggles often echo through generations and are exacerbated by societal stigmatization. Support networks were found to provide a means of solace, promoting empowerment and understanding.

This comprehensive review highlights the intricate challenges faced by women with bleeding disorders. Barriers to medical care, socioeconomic setbacks, and mental health burdens collectively contribute to a complex lived experience. Addressing these challenges holistically is an imperative step toward ensuring comprehensive care and support.

References

1. Sanigorska A, Chaplin S, Holland M, Khair K, Pollard D. The lived experience of women with a bleeding disorder: A systematic review. Res Pract Thromb Haemost. 2022;6:e12652. doi:10.1002/rth2.12652
2. von Mackensen S, Myrin Westesson L, Kavakli K, et al. The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study). Haemophilia. 2019;25:424-432.