The Power of Self Advocacy for Women Bleeders
BY LAUREN PHILLIPS
Editor’s Note: On November 19, 2020, the World Federation of Hemophilia (WFH) hosted its first ever global summit focusing on girls and women with bleeding disorders. It launched the WFH’s new Initiative on Women. A second global summit was held from 8-10 July 2021. National Member Organizations around the globe are now beginning to focus more than ever on the experiences of girls and women with bleedings disorders. Lauren Phillips, a board member of the Haemophilia Foundation of New Zealand, shares her experience and talks about the importance of self-advocacy for women. She has made a career in advocacy as an environmental lawyer in New Zealand. Lauren is also a member of the WFH Youth Committee and the Women with Inherited Bleeding Disorders Committee and has recently been involved in the WFH Youth Twinning Pilot Project between New Zealand and Nepal.
“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me” - Dr. Maya Angelou
I was diagnosed with Type 1 moderately-severe Von Willebrands at the age of eight. My childhood and teen years seemed to be largely unencumbered by my bleeding disorder. However, from the age of 12 I experienced crippling abdominal pains which landed me in the emergency department on numerous occasions. I had very heavy periods and was prescribed hormone therapy (the contraceptive pill) to help manage this. It was always explained to me that as a woman with a bleeding disorder, pain and heavy bleeding were part in parcel of my life experience. As a young teenager with little knowledge or the ability to question things, I accepted this.
As I got older these issues became progressively worse. I became anemic, passing golf ball size clots and unable to leave my bed on some days. Outings with friends became impossible near the time of my period as I couldn’t eat or drink without pain or needing to vomit. I struggled to attend university and work as the pain was combined with crippling fatigue. This meant that usually two weeks out of each month I was out of action. I was prescribed iron, tranexamic acid, strong opioids and more contraceptive pills. This was when I began to start asking questions. Due to attending university in a new city I switched HTC’s and for the first time I was referred to a gynecologist within the hospital, seven years after the onset of symptoms. There was some reluctance from the gynecology team to accept that my experience of periods was caused by anything other than my bleeding disorder. However, I continued to advocate for myself.
I researched, connected with others with similar symptoms and pushed my medical team to consider another diagnosis, endometriosis. I learned as much as I could about the disease and learned that in the majority of cases laparoscopic diagnosis was required. I felt empowered with the information that I had researched to ask that further investigations to be done. I didn’t pretend to know all about the disease or tell the gynecologist they were wrong but having general information about it helped me to understand and discuss my options. After two surgeries in the public system failed, I was incredibly fortunate to have private medical cover and the final surgery was successful.
It took eleven years from the onset of symptoms to finally finding a “cure”. As I matured and changed over that time, so too did the self-advocacy tools that I employed. As my confidence grew I was able to be more direct in the conversations that I had with healthcare professionals and escalate my response when needed. The decision to self-advocate in this situation was an easy one as the cost of not doing so was a life half lived with chronic pain, fatigue and potential infertility. I want to acknowledge that I live in a relatively progressive country where women, by and large, are not restricted by culture or religion from actively participating in decisions regarding their medical treatment, and I recognize that this is not the same for all women globally.
The discourse around women’s experiences of bleeding disorders is changing globally. But for many this change will not happen quickly enough to create real impact in their lifetime. Currently, women have a relative health disadvantage when compared to men of the same age, socio-economic conditions and ethnicity. This means that self-advocacy is an incredibly important tool for women to improve health outcomes and realize their potential.
As women we are incredible at advocating for others. We fight for our partners, our children, our parents and our friends, yet when it comes to our own wellbeing or our own progression, we struggle. There are a lot of theories as to why this is, most centered around the socialization of young girls and the messages that we receive. Young girls who express their opinion are deemed “bossy” or are considered too opinionated, whereas young boys who behave similarly are described as having leadership qualities. When these girls grow into women, they struggle to self-advocate as the message is internalized that they should remain quiet. Though the world has progressed in terms of equality in the way women are treated there can still be an underlying discomfort when women challenge those in positions of authority, such as medical professionals, or where we try to make space for ourselves at the table.
Patient self-advocacy is defined as “representing one’s own interests within the health care decision-making process.” However it can be much wider than this and include education, participating in discussions with other women or asking questions. These other tools of self-advocacy can be particularly important for women who are not able to take as active a role in their own treatment for either cultural or religious reasons.
Research regarding female cancer survivorship shows that self-advocacy is proven to lead to better individual health outcomes. Further, self –advocating, whether it be through seeking health information or through doctor-patient interactions can increase patient satisfaction. Anecdotally I found this to be true in relation to my pregnancy where an induction was recommended due to VWD, my geographic location and my levels not increasing markedly in pregnancy as expected. While the decision to induce remained the same, asking questions, seeking the opinion of another obstetrician and working through the process with my treatment team helped me to feel comfortable in that decision and allowed me a sense of ownership. Not only is self-advocacy essential to improving individual health outcomes, but the value that women add when they do self-advocate and step into leadership roles is exponential. An analysis of the S&P Composite 1500 undertaken by Ernst & Young found that firms with women at the top were worth on average $40m more than those without.
Women need to advocate for themselves to improve their own wellbeing and health outcomes as quite simply, no-one else will do this for us. There are allies and champions of women’s rights that we can lean on and draw energy from, but the real potential for change lies within us. For those of us who are comfortable self-advocating or are in positions of leadership, we have a duty to act as mentors to other women. It is our responsibility to empower all women to build the necessary skills, courage and confidence to self-advocate. Even those who do not necessarily have self-advocacy experience can help to foster a sense of independence and confidence in women by encouraging them to take an active role in their healthcare, to step into leadership roles and to ask questions about decisions that affect them in all areas of life. As women we need to champion ourselves – we create meaningful impact for those around us in our personal and professional life, now it is time we do something for ourselves.
