Navigating Self-Advocacy in Women's Health: A Heartfelt Guide to Empowerment and Hope
- Nina Rodriguez
- May 19
- 7 min read
When faced with health challenges that alter the way we live, such as chronic illnesses, misdiagnoses, or hidden pains, the grief can feel just as profound. This form of grief, often overlooked, is a living loss that can leave women feeling unseen, dismissed, and overwhelmed in a system not built for us. But within this complexity lies hope for empowerment, for tools, and for a community that understands and resources women navigating a broken healthcare system that often operates without our care in mind.
In this post, I’ll share insights from Spencer Moore, a dedicated women’s health advocate and founder of The Hairy Chin podcast. Her journey through a lifetime of life-altering diagnoses, advocacy, and healing highlights how we can reclaim our voices.
Each self-advocacy skill gained, each conversation that sheds light on this topic helps us navigate this reality with more agency. And that, makes a difference.
Understanding the Unique Griefs of Women's Health
Traditionally, grief is associated with the loss of a person or beloved pet companion, yet many women experience ambiguous loss or grief when their health is compromised or dismissed.
Spencer describes this as navigating a healthcare system that often treats women as incidental or secondary to male-centric research.
"I talk about how to navigate healthcare systems that really weren't built for women because we're dismissed and our symptoms and our pain are minimized." - Spencer Moore
This systemic oversight leads to what she calls "living losses" like missed diagnoses, untreated pain, and the frustration of feeling unseen or unheard.
The "Hot Potato" Patient: A Reflection of Systemic Gaps
Spencer’s self-description as a "hot potato" patient reveals the gaps in our current healthcare system when it comes to women's healthcare needs. Healthcare tends to bounce women around from specialist to specialist, rarely addressing the whole system, or how hormonal changes may result in multiple symptoms that are often addressed separately instead of parts of the same root cause. This fragmentation may hinder effective treatment and deepens feelings of frustration and helplessness. It’s a systemic issue rooted in a lack of integrated care and research focused on women’s bodies.
The Emotional Toll of Living Losses
Living with chronic health issues, like endometriosis or hormonal imbalances, and repeatedly facing dismissive attitudes can generate palpable grief. Women mourn their previous vitality, their sense of control, and their right to be heard. As Spencer stated, "there's a lot of grief in not just illness, but in not being heard."
Recognizing this grief is a vital step towards reclaiming agency and learning the skill of self-advocacy.
The Power of Self-Advocacy
Self-advocacy is not about battling healthcare providers, but about equipping oneself with skills like clarity, preparation, and communication, to navigate complex systems safely. Spencer emphasizes that advocating is a set of learnable skills: knowing what to say, how to say it, and when to ask for more.
"My biggest message that I try and give to women is that advocacy is not about your personality."
Practical Tools for Self-Empowerment
"Advocacy is preparation, it's communication, it is connection with the body," Spencer notes.
Navigating modern healthcare can feel daunting, especially when faced with vulnerability, shame, or systemic dismissiveness. Fortunately, Spencer has developed simple, effective tools to level the playing field.
The One-Page Health Summary
A straightforward PDF, this cheat sheet helps women prepare for appointments by listing medications, allergies, symptoms, and key questions. Having this information at hand before your appointment with your medical provider:
Focuses the conversation
Reduces stress during appointments
Ensures crucial points aren’t forgotten
👉 Action step: Prepare your health summary before your next appointment, and save it somewhere that's easily accessible for your next appointment.
Language Matters: Shif From "I Feel" to "I Experience"
"One thing I talk about is saying I experience instead of saying I feel, because feel is actually more your interpretation."
Doctors often phrase questionnaires asking, "Are you feeling..." but Spencer suggests saying, "I am experiencing..." This subtle shift makes a difference because it conveys observable facts, prompting better responses from healthcare providers.
Using precise language that aligns with clinical understanding may foster clearer communication and results.
Digital Resources and Support
Accessible online tools like advocacy PDFs, training modules, and resources, empower women to educate themselves and others. These materials demystify complex topics and foster confidence.
In addition to her work as a health advocate, Spencer mentions the Know Your Lemons campaign is a groundbreaking initiative that simplifies breast health education through visual aids, making it more approachable and less intimidating. By using lemons to represent the different signs of breast cancer, the campaign empowers women to recognize warning signs without fear or shame.
As Spencer emphasizes, “Visuals and clear messages reduce shame and empower women to take control of their health.” This approach not only educates but also encourages women to engage in proactive health practices, transforming potential anxiety into informed action.
Addressing the Unique Barriers Women Face in Medical Environments
The intersection of systemic biases and societal expectations hampers women’s ability to seek and receive proper care.
The Shame and Silence Around Body and Sexual Health
Research Spencer conducted shows that:
60% delay appointments due to body self-consciousness
53% feel uncomfortable discussing sexual or vaginal health
Many women withhold questions out of shame
Many women internalize societal taboos, which creates grief and prevents necessary care. Building a language and a safe space for these conversations is empowering, and in some cases, may be life-saving.
Cultivating Confidence in Medical Interactions
Cultivating confidence in medical interactions is crucial for women navigating a healthcare system that often overlooks their unique needs. Many women have been conditioned to downplay their symptoms, leading to inadequate care. However, embracing self-advocacy can transform these interactions.
"...you have the right to say 'I want testing done,' because I think that women have been ingrained to minimize themselves."
Three Key Advocacy Skills to Remember:
Preparing Questions and Concerns in Advance
Before appointments, take time to list your symptoms, concerns, and any questions you have. This preparation ensures you cover all important points and helps you stay focused during the consultation.
Using Clear, Clinical Language
Communicate your symptoms using precise, clinical terms. For example, instead of saying "I feel tired," say "I am experiencing fatigue." This clarity helps healthcare providers understand your condition better and respond appropriately.
Requesting Specific Tests or Second Opinions
Don't hesitate to ask for specific tests if you believe they are necessary. If you're unsatisfied with a diagnosis or treatment plan, seeking a second opinion is your right. This proactive approach can lead to more accurate diagnoses and effective treatments.
Your voice is powerful.
While the healthcare system may have its flaws, your active participation can lead to better care. By advocating for yourself, you not only improve your own health outcomes but also contribute to a broader movement for more inclusive and responsive healthcare.
The Role of Community and Trusted Advocates
Spencer emphasizes the importance of finding trustworthy advocates—medical professionals and fellow patients who understand the complexities of female health.
Trust, built over transparent communication, is a cornerstone of healing.
The Power of Knowledge and Continuous Learning
Learning to navigate healthcare isn’t a one-time event; it’s an ongoing process. Spencer’s podcast exemplifies this, offering practical advice, expert insights, and shared stories to foster collective wisdom.
Tip: Regularly seek out credible sources, empower yourself with knowledge, and connect with others on similar journeys.
The Hope for Systemic Change
Awareness raises change.
As more women learn self-advocacy skills and demand research inclusive of women, systemic gaps will gradually close. Every conversation, like this one, fuels hope for more equitable healthcare.
Living losses in women’s health are real and valid, but they don’t have to define us. By cultivating skills of clear communication, preparation, and discernment, women reclaim agency over their health and their lives.
Remember, you are not alone in this journey, and hope grows with each step forward.
Your Next Steps:
Start your personalized health summary
Practice using precise language—"I am experiencing..."
Join online communities and trusted advocates
Keep learning and advocating—your voice matters
FAQs
What are common signs that a health advocate truly understands women's health?
A trustworthy advocate recognizes the complexity and nuances of female health, avoids quick fixes, and collaborates rather than sells solutions. They acknowledge the limitations of current research and prioritize your individual context.
How can I prepare for a medical appointment to get the best care?
Create a one-page summary listing medications, symptoms, questions, and concerns. Practice describing your symptoms with precise language like, “I am experiencing...” and bring your notes to the appointment.
Is AI a helpful tool for self-advocacy in health?
AI can be a valuable starting point for research but should never replace professional medical advice. Use it to gather information, then consult with your healthcare provider before making decisions. (Remember to vet your sources, even with Ai!)
How can I overcome shame when discussing sensitive health issues?
Practice using clear, clinical language. Remember that your health and wellbeing are valid and deserving of attention. Seek out safe spaces and trusted professionals who create a nonjudgmental environment.
Why is trust between patient and doctor essential, and how can I build it?
Trust is built through clear communication and preparation. By advocating for yourself and asking specific questions, you foster mutual understanding, which facilitates better care and reduces grief in feeling unseen.
Remember: Your voice is powerful. Your health matters. And through knowledge, connection, and resilience, hope blooms even in the midst of living losses.
Connect with Spencer Moore:
Instagram: @the.hairy.chin
YouTube: @thehairychin
Website: thehairychin.com
This episode and post are for educational purposes only and do not constitute medical advice. Please consult a qualified healthcare provider regarding your health concerns.
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