Self-Advocacy in Healthcare: Do It for You (and the Person After You)

Self-advocacy isn’t being difficult. It’s how you get safer care

Self-advocacy in healthcare isn't just about getting what you need today.

Yes, it matters because you deserve to not sit stuck in discomfort, waiting months, being brushed off, or leaving appointments without the tests, referrals, or consideration you actually need.

But there's a second reason that's bigger than you.

Every time you advocate clearly and calmly, you're also changing the experience for the next person who walks into that room after you. When you ask the extra question, request clarification, or push back on being dismissed, you force the system to think harder. Even small moments of reflection can make it harder for a clinic, hospital, or practitioner to keep running on autopilot.

A lot of us (especially women and marginalised folks) have been trained to not make a fuss. To be easy. To feel embarrassed for needing help. To minimise. To apologise for taking up space.

But when you've had enough, and you're fighting for answers or safety or basic respect, your words matter. Your follow-up matters. Your paper trail matters.

Why self-advocacy helps other people too

If it’s not written down, it often doesn’t exist

Healthcare systems are built on patterns and processes. When something goes wrong and nobody documents it, the system doesn't learn. When something gets documented clearly, it can trigger review, training, and process changes.

So self-advocacy isn't only personal. Its collective.

A real example: the wrong bread problem

Small errors can become big risks

During a recent hospital stay, I was repeatedly delivered the wrong bread with my meals.

I eat gluten-free. Not because I'm coeliac, but because my body doesn't tolerate gluten well and I get consequences that make recovery harder.

The first time it happened, I flagged it to the kitchen. The kitchen manager came by, apologised, and I got the correct food. I assumed it was sorted.

But it happened again. And then again.

And that's when something shifted for me.

Because in a hospital, people are in all kinds of states. Some people are in pain, medicated, exhausted, confused, or just not well enough to notice what's on the plate. And if this common mistake happens to someone with coeliac disease, it's not just discomfort. It can trigger an autoimmune reaction and cause real harm.

So, I escalated it.

I went to the nurses' station and explained what had happened. I asked for the kitchen manager to come and speak with me. And when she arrived, I didn't just ask for the correct food. I asked about the system.

Because I've worked in food environments. I've run businesses. I know what good processes look like, and I could see where the gaps were.

We talked through what needed to change to reduce the risk of it happening again. I also asked whether she understood what gluten exposure can do to someone with coeliac disease and it was clear she didn't fully know. So, I explained it, and I asked for changes to be made.

Then I submitted a feedback form in writing with everything we’d discussed.

The part people miss: if it's not written down, it often doesn't exist

Advocacy is a skill set

In healthcare systems, written information matters.

·       If it isn't documented, it's easier for it to disappear.

·       If it isn't logged, it often doesn't trigger review.

·       If it isn't in writing, it's harder to prove patterns.

A paper trail is what makes change more likely.

A simple self-advocacy framework

Here is the framework I want you to steal.

1) Stand in your power

You are not too much for wanting safe, appropriate care.

2) Remember you’re not only doing it for you

If you can't advocate for yourself today, do it for the people who come after you. Your advocacy can make the system safer for someone else.

3) Write it down

Ask for notes, summaries, or next steps in writing. Use patient feedback channels. Email if that's available. Create a record.

What the research says (briefly)

Self-advocacy and patient-centred communication are linked. In one study, higher self-advocacy was associated with better patient-centred communication in a pain context. That doesn’t mean the system suddenly becomes perfect, but it does support the idea that how we show up and communicate can influence the quality of the interaction.

There are also self-advocacy interventions being formally tested (including digital tools), which matter because it shows this isnt just confidence or personality. Advocacy is a skill set that can be taught, practiced, and measured.

Sources: - Associations Among Self-Advocacy, Patient-Centered Communication, Pain Intensity, and Opioid Stigma (Oncology Nursing Forum): https://www.ons.org/publications-research/onf/52/3/associations-among-self-advocacy-patient-centered-communication-pain - Efficacy of a Self-advocacy Serious Game Intervention (ClinicalTrials.gov): https://www.clinicaltrials.gov/study/NCT04813276

Want help advocating at your next appointment?

If you're worried about not being heard at your next appointment, I have a free downloadable specialist communication letter in my Members Toolkit. Additionally, if you feel overwhelmed and are at the beginning of your self- advocacy journey, it can help to bring a support person into the consult with you – they can help to shift the power balance in the room, take notes and ask questions.

·       Members Toolkit: https://www.persistentnutrition.com/memberstoolkit/

·       Book a consult: https://www.persistentnutrition.com/book-online

Disclaimer

General information only not medical advice. If symptoms are severe, changing, or impacting your safety, please see a qualified clinician.

About Bek

Rebekah (Bek) Sutton is a nutritionist in Perth, Western Australia, specialising in chronic illness, neurodivergence, and trauma-informed care. Her work is evidence-based, body-neutral, and practical with a focus on helping people build routines that work in real life.

Copyright

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