How to Advocate for Yourself in Healthcare and Beyond
When Your World Suddenly Shrinks
When life throws something big at you, illness, uncertainty, or challenge, it’s easy to feel small.
I learnt that finding your voice, even when it shakes, can change everything.
When I became a patient, the world didn’t just get harder, it got smaller. My days started filling up with appointments. My vocabulary expanded to include terms I’d never heard before. My calendar seemed to be owned by other people. Paperwork multiplied like laundry. Every hospital corridor started to look the same, and every waiting room chair got more uncomfortable each day. Bit by bit, without meaning to, and without warning, I lost my sense of control.
In the beginning, I remember sitting in rooms where people were discussing me, my body, my results, my future and doing so without me fully understanding half of what they were saying. They spoke quickly. They spoke kindly. But they spoke a language I didn’t yet know.
I started nodding along, like a polite tourist who smiles even though they’re not entirely sure if they’ve just agreed to buy a timeshare in someone’s basement, or if they have agreed to have sugar in a “Café con Leche”!
What I really felt was small, overwhelmed, and voiceless. And then one day I realised something quietly radical. If I didn’t speak up for myself, no one else could do it for me. Even the most brilliant doctor wasn’t inside my body. Even the most caring partner couldn’t feel what I was feeling. Even the most supportive friend wasn’t able to make decisions for me.
Advocacy Wasn’t a “Nice to Have.” It was Survival.
But, as we know survival is hard, and so can advocating for yourself. Most of us weren’t raised to advocate for ourselves. Let’s be honest, most of us were raised to, be polite, not cause trouble, nod and smile, trust authority, say “thank you” even when we’re confused, and avoid being the person who slows things down. We’re taught from childhood that being “good” means being agreeable. But agreeable doesn’t save you in a medical system built on speed, capacity, and standardised procedures. So, when someone in a consultation room says something you don’t understand, part of you thinks: “I should know this.”, “I don’t want to look silly.”, “I don’t want to be a burden.” Or “I’ll figure it out later.”
But here’s the secret I’ll share with you: Advocacy isn’t confrontation, it’s protection. It’s not rude, it’s responsible, and It’s not dramatic, it’s necessary. Your body, your treatment, your wellbeing; these are not topics where you need to stay quiet or be polite.
When Things Shifted
I remember a specific appointment, one of those “big news” ones where your stomach knows more than your brain. I sat there listening while the specialist talked at rapid speed, using phrases like “possible margins”, “further investigation”, and “we’ll need to monitor.” Everyone else in the room nodded. I sat still, thinking I have absolutely no idea what any of this means.
So, I did something that felt rebellious at the time….. I said softly, “I’m sorry… but I don’t understand. Can you explain it differently?”
The room paused. And then, miraculously, the doctor smiled, and explained.
Slower. Simpler. More Human.
Not only did I understand…I felt myself return to the conversation. I wasn’t a bystander anymore. I was a participant. A person. The person most affected by this entire conversation. I was me.
The Practical Side
Here are some of the things that genuinely changed the game for me:
- Ask every question you need, even twice (or five times): If something doesn’t make sense, it’s not a sign that you’re not smart. It’s a sign that the explanation wasn’t clear enough. That’s their job, not your flaw.
- Take notes: Even if your handwriting looks worse than theirs and you can’t spell endacarsonoma or oxoplantin (or whatever they said), because you will not remember everything. You’re not supposed to. Stress hijacks your memory.
- Bring someone with you: Not because you’re incapable of doing things for yourself, but because two brains hear more than one. They catch the things you miss. They remember what you forget.
- Repeat what you heard: Try saying things like, “So what I’m hearing is… is that right?”.
- Trust your instincts: If something feels off, timing, tone, treatment, explanation, then pause. Ask. Request another option. Seek a second opinion. Your intuition is valid.
- Remember that YOU are the expert in your body: Doctors know medicine. You know you. Both are necessary for good decisions.
- Write down your ‘non-negotiables’: Energy levels, side effects you’re anxious about, work commitments, childcare responsibilities, all of these things shape your treatment too.
- Give yourself permission to take up space: You’re not inconveniencing anyone by caring about your wellbeing.
When Your Voice Trembles, Use It Anyway
There’s a myth that confident people don’t get scared. That self-advocates walk into rooms bold, certain, and eloquent…… Nope.
Sometimes speaking up sounds like a whisper. Sometimes it sounds like a question asked with shaky hands. Sometimes it’s a deep breath before the words come out. Your voice doesn’t need to be steady to be powerful. It just needs to exist.
Humour Helped Too
Humour became one of my quiet superpowers. Not because Cancer was funny, but because humour reminded me that I was still me. One of my sayings is that “Humour is rebellion.” It gives you back a bit of control.
One of the things that surprised me most was when I finally started speaking up, the clinicians didn’t push back. In fact, most of them welcomed it. They leaned in, listened more closely, and told me they’d rather have a patient who asks, clarifies, and collaborates.
It turns out that advocating for yourself doesn’t just help you, it helps them take better care of you, too.
If you have found David’s blog post helpful you may like to find out more about his cancer journey and experiences.
