Self-Advocacy in Medical Settings: Practical Strategies
Self-advocacy in medical settings can be challenging, especially for neurodivergent individuals who may struggle with communication, medical trauma, or being taken seriously by providers. Here are some practical self-advocacy tips to help navigate medical appointments effectively:
Before the Appointment
✔ Clarify Your Needs & Goals: Write down key concerns, symptoms, or questions. Be specific (e.g., "I've had migraines 3x/week for the past two months, and painkillers don’t help").
✔ Bring Notes & Documentation: If applicable, track symptoms, medications, sensory sensitivities, or past experiences with treatments to provide objective information.
✔ Ask for Accommodations: If you need more time, written instructions, a quiet waiting area, or a support person, call ahead to request these.
During the Appointment
✔ Use Clear, Direct Language: Stick to facts and feelings (e.g., “I need support managing pain that affects my daily life.”). If masking makes this difficult, prepare a script in advance.
✔ Repeat & Confirm Information: Summarize what the provider says to ensure understanding. Example: “So you're recommending X treatment, and I should follow up in two weeks?”
✔ Self-Advocate Firmly but Respectfully: If dismissed, restate concerns with confidence:
“I hear you saying it’s not a big concern, but this is significantly impacting my quality of life.”
“I would like to explore other options. Can you explain why this isn’t recommended?”
✔ Bring a Support Person if Needed: A trusted friend or advocate can take notes and help reinforce your concerns.
After the Appointment
✔ Request Written Instructions: If you struggle with auditory processing or memory, ask for a summary in writing or check the patient portal.
✔ Follow Up if Necessary: If something wasn’t addressed, book another appointment or seek a second opinion.
✔ Trust Your Lived Experience: If you feel unheard or dismissed, you deserve a provider who listens—consider switching doctors if necessary.