Women with Bleeding Disorders: How to Be Your Own Best Patient Advocate

Empower yourself to speak up and get the care you need
Author: Liz Krieger

For years, doctors dismissed Lisa Webb’s heavy bleeding as just something that women in her family had to endure. Despite multiple miscarriages, two harrowing childbirth experiences, multiple surgeries and countless unexplained bruises, the cause of her problems remained unknown.

Finally, when she was 37, this Texas homemaker was diagnosed with the rare bleeding disorder factor XI deficiency. While in a way all the pieces of her life came together, she also simultaneously fell apart. “I went down a rabbit hole and into a deep depression,” says Webb, feeling deeply angry that she had gone so long without adequate testing, and that the medical professionals had simply not believed that she could have a bleeding disorder.

Today, a decade later, Webb has become a passionate advocate not just for herself but also for other women with bleeding disorders—so they find the care they need.

Being an empowered patient is always important, but when you’re a woman with a bleeding disorder, having confidence that you can speak up and get the care you need is essential.

Even in 2020, long-standing gender, racial, ethnic and religious biases often make it difficult for female patients to be fully heard, says Christie VanHorne, MEd, MPH, a public health consultant based in Poughkeepsie, New York, who specializes in patient empowerment and in women with bleeding disorders.

“Bias in healthcare presents itself when women and those from marginalized groups are ignored, misdiagnosed, dismissed or are the recipients of systemic bias within the healthcare system,” says VanHorne, founder of How to Talk to Your Doctor, a project that inspires and educates people to be more active participants in their healthcare. “Women are sometimes not trusted by medical professionals to understand the symptoms they experience, or they’re made to feel that those symptoms are all in their heads.”

A Troubling History

History plays a role in why this bias has continued, VanHorne says. For years, women of childbearing age were left out of clinical research for fear that it might harm a fetus or interfere with fertility. Plus, the idea that medical problems are all in a woman’s head stems from the history of the term “hysteria,” which was a mental disorder attributed to women only. “The term was removed from the diagnostic manual in the 1950s, but women are still stereotyped as being hysterical or ‘crazy,’” VanHorne says.

Then there are the systemic barriers that women can face. These include problems securing transportation for appointments, finding qualified, well-informed doctors in certain areas, difficulty getting child care and sparse insurance coverage. “The more intersectional a woman’s identity is (i.e., the more societal groups she belongs to that are discriminated against), the more likely it is that she will encounter these sorts of biases and issues,” VanHorne says.

Women with bleeding disorders face other unique barriers, since many providers still view bleeding disorders as affecting only men. “Many women are dismissed because of a lack of knowledge of the conditions by physicians, and some doctors may brush off their patients’ symptoms as just a family history of heavy periods,” VanHorne says.

Webb says primary care doctors she sees often either don’t believe it’s possible for women to have bleeding disorders or are woefully undereducated about them, because little is taught about bleeding disorders in medical school.

What You Can Do to Be More Empowered

To be a more empowered patient, here’s what VanHorne and Webb recommend:

• Find a doctor who will act as a partner in your care.

“That means someone who will listen and believe your lived experiences and symptoms,” VanHorne says. “This is key for a proper diagnosis, treatment and long-term management. If you don’t trust your doctor, you won’t go to that doctor when you really need to.” You want to feel comfortable asking as many questions as you need to. Some specific tips:

  • If you live in a rural area where providers are scarce, or you’ve tried various doctors and continue to feel dismissed, VanHorne recommends asking your hemophilia treatment center if there’s a doctor you can connect with through telemedicine. “This technology is helping women have more options when it comes to finding a provider,” she says.
  • If you have private insurance or Medicaid, do not let your insurance force you into a specific provider. Reach out to advocacy organizations such as the National Hemophilia Foundation (NHF) or local communities to help navigate the system.

• Know your family history, but also know your own body.

“You don’t have to accept that this is just ‘how it is’ for women in your family or that you are just a ‘heavy bleeder,’” VanHorne says. “If you feel like something is wrong, then it’s so important to find a doctor who will listen and trust your lived experiences and symptoms.”

• Use your voice, and tap your resources.

“It is not your job to be liked,” Webb says. She routinely brings informational pamphlets about women and bleeding disorders to doctor and dentist appointments to enlighten and educate providers. You may find it helpful to bring a trusted friend or relative with you, especially if that will help you better advocate for yourself. Webb says you can—and should—walk away from a medical practice or doctors who are dismissive of you or are resistant to the information you give them. “That’s something I’ve had to do numerous times,” she says.

• Bring detailed notes with you to appointments.

For women who menstruate, data is your friend, Webb says. “Keep a detailed journal of your periods—how long they are, how heavy, how many sanitary products you use. Having information like that can be critical when you see a new provider, but it will also help you feel more empowered with a provider you’ve been seeing for a while,” she says.

• Stay up to date on your bleeding disorder.

“Keep educating yourself, because that can truly improve the quality of your life,” Webb says. “While I don’t recommend turning to Google to seek out reputable information, there’s plenty of information online that’s verified and from good organizations,” including NHF and scientific journals.

For More Information:

Audience