How to Advocate for Yourself in Medical Appointments Without Burning Out

By Jasmine K. Y. Loo (Psychologist)

Medical appointments can be draining for anyone, but for neurodivergent people, they can be especially overwhelming. Between navigating communication differences, explaining complex health histories, and managing sensory overload, many of us leave appointments feeling unheard, dismissed - or simply exhausted.

Advocating for yourself shouldn't come at the cost of your energy, dignity, or mental health. Here are some strategies to help you prepare for medical appointments in ways that reduce stress and increase your chances of being understood.

1. Use a Checklist to Clarify Your Priorities

It’s easy to forget key points during an appointment - especially if you’re anxious, feeling unwell, or processing a lot at once. Having a short checklist of what you need to cover can help you stay focused and reduce cognitive load.

Your checklist might include:

• Main symptoms or concerns

• Changes in medication or health status

• Questions you want answered

• Requests for referrals, tests, or paperwork

You can create this yourself, ask a support person to help, or even use AI to structure your notes into clear, concise talking points. This can be especially helpful if you struggle with articulating complex experiences or tend to go blank under pressure.

2. Prepare a Brief Script for New Providers

When seeing a new professional, it can help to prepare a short written summary of things you want them to know about you.

This might include:

• Communication preferences (e.g., “Please avoid vague explanations” or “I process better with written summaries”)

• Sensory considerations (e.g., “Fluorescent lights are triggering for me”)

• Relevant diagnoses or history

• Any previous difficult experiences with the healthcare system

Bringing this summary with you means you don’t have to rely on verbal explanation - especially useful if you get nervous, shut down, or feel like you’re not being heard. It also sets the tone early for a more collaborative dynamic.

3. Use Written Communication to Supplement Verbal Conversations

If articulating yourself in the moment is difficult, it’s okay to use written formats to support your communication.

This could mean:

• Bringing a typed letter or bullet points to hand over

• Sending a secure message or email in advance (if the clinic allows it)

• Using apps or digital notes on your phone during the appointment

Some neurodivergent people find they can express themselves more clearly and calmly in writing, especially when dealing with emotionally loaded topics like pain, trauma, or diagnostic dismissal. This can also help ensure your message is received as intended.

4. Set Boundaries Around Energy and Expectations

It’s okay to set limits around how much you’re willing to explain in one appointment. You are not required to justify your existence or retell your life story to be taken seriously.

If an appointment is getting too overwhelming or off-track, you might say:

• “That’s all I have capacity to cover today.”

• “Can we focus on just one issue at a time?”

• “I’d prefer to discuss this in writing, if possible.”

You deserve care that meets you where you are - not care that requires you to mask, over-explain, or perform for validation.

5. Bring a Support Person If That’s Helpful

Having someone with you - whether in person or on speakerphone - can help reduce anxiety, back up your concerns, or even just provide moral support. They don’t have to speak for you (unless you want them to), but their presence can sometimes shift how professionals engage with you.

If you’re worried about being dismissed, misunderstood, or struggling to advocate for yourself, let your support person know in advance how they can assist. You can even debrief with them afterward to make sense of the appointment.

Remember: You Deserve Respectful, Accessible Healthcare

Self-advocacy can be exhausting, but it shouldn’t be impossible. Tools like scripts, checklists, and written communication aren’t “cheating” - they’re accessibility tools that make it safer and easier for you to get the care you need.

Your experiences are valid. Your needs are real. And you shouldn’t have to burn yourself out just to be heard.