Why Self-Advocacy Shouldn’t Mean Going “Balls to the Wall”
TL; DR: In a nutshell
Self-advocacy is often misunderstood as something reactive or confrontational.
Many women only speak up when something goes wrong but it shouldn't take a fight to be heard.
This piece reframes self-advocacy as a calm, confident, everyday skill that helps you get care that reflects your needs and values.
We need systems and support that welcome your voice from the start, not just when things fall apart.
Reflections on why we need a self-advocacy reframe
Many women have come to associate speaking up for their health with being “difficult.” But self-advocacy doesn’t have to mean going in swinging.
When I launched the Regarding Me podcast earlier this year, I was continuing a conversation I’ve been part of for years, one grounded in my own lived experience of breast cancer, shaped by hundreds of conversations and sharpened by research and reflection. For the past six years, I’ve been speaking about self-advocacy in relation to breast cancer surgery and reconstruction: from my Breast Recon 101 Live Q&As on Instagram to the Rewritten Me podcast interspersed with blogs, articles and talks.
Regarding Me is an extension of that work. It has the same heart, but a wider lens, exploring what self-advocacy really means and how it can be practiced in any healthcare setting. With the start of season 2, I want to reflect on a common misunderstanding that’s become apparent during the recording of Regarding Me: that self-advocacy only comes into play when there’s a disagreement between a patient and their healthcare provider. Or, as one Rewritten Me guest with metastatic breast cancer called it, “balls to the wall” self-advocacy!
what Do I Mean by Self-Advocacy?
Knowing what self-advocacy means can help us understand how to advocate for ourselves and feel safe and supported when you do.
One guest from Season 1 thought she didn’t belong on the podcast because she had a supportive, collaborative relationship with her doctors and there were no disagreements or battles to fight. But that is self-advocacy. Hers was a positive experience of being a proactive participant in her care. And I wanted to share that as it’s important for us to hear - and show - how self-advocacy can work well. Because it’s not just about speaking up when something ‘goes wrong’ or isn’t what you’d hoped for. For me, self-advocacy in healthcare is:
· knowing yourself
· knowing your rights
· understanding your needs, values, boundaries and goals
· and communicating them clearly, confidently and respectfully with your healthcare team and support network
And how much you choose to advocate is up to you. Knowing how involved you want to be, how many questions you want to ask or whether you want to consider alternative options is knowing yourself and understanding what feels right for you. It’s also important to note that self-advocacy isn’t necessarily about going it alone. Or about undermining your healthcare team or placing the burden of receiving person-centred care on your shoulders. It’s about collaborating in informed shared decision-making to get care that reflects what matters to you and meets your needs.
The Self-Advocacy Gap
From my experience in the breast cancer and wider cancer community, it seems there is a self-advocacy gap. Even when women want to speak up, many don’t know where to start. Plenty say that they’ll strongly advocate for a family member or their kids but when it comes to their own healthcare, they worry about being seen as difficult, emotional or ungrateful. This is especially true in cancer care where the pressure to “just be thankful” for treatment runs deep (side note: you can be grateful for your care and still want things to be different, more respectful or more aligned with your needs).
And that’s not surprising. Heightened emotions, power imbalances, rushed appointments and medical jargon can make it hard to ask even simple questions, let alone seek clarity or explore other options, particularly when it might feel like you’re questioning the authority of a specialist who holds your life in their hands.
One Regarding Me guest wondered whether it was possible to be both a “good” patient and a “mouthy” one who asked a lot of questions.
Over the years, I’ve seen how women don’t realise they’re allowed to ask about alternatives, challenge their treatment plans or request more time to think (and, yes, I’m one of those women). Basic rights like understanding risks, benefits or costs can feel completely out of reach when you’re overwhelmed and in shock. People positively squirm at the mere thought of asking for a second opinion (ditto me, again).
It goes without saying, but it’s worth being clear:
this isn’t about placing blame on women for not getting the care they need or are entitled to. Women who aren’t listened to, silenced or dismissed are strong self-advocates who are up against systems that fail them. What we need are healthcare systems that consistently invite and support proactive patient participation through self-advocacy as part of person-centred care, in practice and not just policy, no matter what postcode they’re in or how they’re funded.
We’re often told to speak up, but rarely given the tools, language, time, encouragement and/or space to do it. The self-advocacy gap only widens when we’ve already been dismissed, misdiagnosed, not taken seriously or made to feel like we’re overreacting. These systemic failures help create the gap and may also perpetuate the belief that self-advocacy has to be confrontational because they feature in stories of medical gaslighting and gender bias we hear in the media, where women have no choice but to go “balls to the wall”.
Why We Need to Fill the Gap
When it comes to cancer care for women after a diagnosis, self-advocacy doesn’t only affect the choices they make about their care. It can also have a real impact on their outcomes. Research suggests that self-advocacy can lead to:
· More person-centred care
· Earlier and more effective symptom management
· Improved quality of life
· Reduced use of preventable healthcare services
It’s a powerful reminder of why self-advocacy matters and why we need to open up conversations about how to make space for it across wider healthcare settings and services, so patients can proactively participate in their care before they’re even close to the wall.
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I write about self-advocacy, women’s health, and getting the care that’s right for you on your terms.
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