Have you ever walked out of an appointment thinking, “That’s not what I meant,” or “They didn’t really understand how hard this is for me”? Feeling unheard is a common experience, and we are here to help you find your voice when you don’t feel heard in the health system.
You are the expert of your own body and daily life. Health professionals bring clinical knowledge, but you bring lived experience. The best outcomes happen when those two forms of expertise work together.
Self-advocacy isn’t about being difficult or demanding. It’s about being informed, prepared, and confident enough to participate in decisions that affect your wellbeing.
And your voice doesn’t just matter in the clinic, it matters at a systems level too.
Here are some steps to make sure you find your voice and feel heard.
Prepare for your appointment
Before your appointment, take a few minutes to write down:
- your top two or three concerns
- how your symptoms are affecting daily life
- any specific questions you want answered
Try to use real-life examples. Instead of saying, “my arthritis is bad,” you might say, “my hand pain means I can’t hang washing or vacuum without severe pain later.” Clear examples help others understand the impact on your independence and safety.
If appointments feel overwhelming, consider taking a support person. A friend, partner, or whānau member can listen, take notes, and help you feel more confident speaking up.
During your appointment
It’s okay to slow things down. You can say:
- “Can you explain that in a different way?”
- “What are my options?”
- “What happens if I don’t choose this treatment?”
- “I don’t feel my pain is being fully understood.”
You have the right to ask questions and understand your choices. If you disagree or feel uncertain, you can respectfully say so. Shared decision-making works best when it’s genuinely shared.
If you still feel unheard
Sometimes, despite your best efforts, you may still feel dismissed. If that happens, you have options.
You can:
- ask for a reassessment or review
- request a second opinion
- ask to see a different clinician
- seek independent advocacy support
While we don’t provide individual advocacy representation, our Arthritis Assist team can help you prepare, understand your options, and — where appropriate — provide letters of support based on your history with us.
We can also amplify your story.
When people feel ready to share their experiences (anonymously if preferred), those stories help us speak with strength and credibility when we meet with Ministers, MPs, and health leaders. They help ensure arthritis remains visible in policy conversations.
