Empowering Your Voice - Advocating for Yourself at Doctor Visits

Living with a chronic illness like an autoimmune condition(s) brings its own set of challenges, one of which is navigating the healthcare system. It's essential to advocate for yourself during doctor visits to ensure you receive the best possible care tailored to your needs. This post will guide you through practical strategies to empower your voice and become an active participant in your healthcare journey.

Prepare Before Your Appointment

  • List Your Symptoms: Write down your symptoms and flares, noting their frequency and severity. Be as specific as possible. I highly recommend keeping a daily diary noting the above as well as food, sleep cycle, and any significant lifestyle changes (stress can trigger symptoms). These notes and logs can reveal helpful patterns.
  • Prepare Questions: Create a list of questions you have for your doctor. Prioritize them to ensure the most important ones are addressed.
  • Document Your History: Keep a record of your medical history, including previous treatments, tests, medications, and any other relevant health information. Don’t be shy about asking for your results before leaving an appointment. 
  • Research Your Condition (if known): Educate yourself about your illness, potential treatments, and recent medical advancements. Knowledge is power.

During the Appointment

  • Communicate Openly and Honestly: Share your symptoms, concerns, and the impact your illness has on your daily life. Don't downplay what you're experiencing. Concrete examples can help doctors understand your struggles better.
  • Ask Questions: Don't hesitate to ask for clarifications or further information about your diagnosis, treatment options, and prognosis.
  • Discuss Treatment Plans: Talk about the benefits and risks of suggested treatments. Share your preferences and concerns.
  • Have a comprehensive treatment plan that goes beyond just medication to include lifestyle changes related to diet, exercise, stress management, etc. 
  • Take Notes: Write down important information or ask a loved one to accompany you to do so. During my early days of diagnosis, my best friend came with me to EVERY major doctor visit. I needed to make sure I was hearing everything correctly. It was invaluable to have someone to discuss the appointment and next steps with after visits.   

After the Appointment

  • Review Your Notes: Go over the notes from your visit and research any additional information you need to understand your care plan fully.
  • Follow-up: If you have any questions after the appointment, don't hesitate to contact your doctor's office. Your doctors won’t know if you didn’t ask a question or if you forgot a potentially important symptom if you don’t speak up. Remember, your care team is there to support you. If you don’t feel supported, I recommend seeking another opinion/practitioner. 
  • Connect with online support groups and organizations to learn from others' experiences. But always consult your own doctor about specific treatment suggestions. My connection with the Autoimmune Association has been invaluable (in fact I’m now on the board). 

Change Practitioners if necessary: I can’t stress this one enough.  If you're not satisfied with the care plan and or your concerns aren't being addressed or worse are being dismissed, seek a second, third, or fourth opinion. Autoimmune diseases are not curable and will follow you for the rest of your life, therefore, It’s important to have the right medical team to support you. This is about your health and well-being. If I didn’t advocate for myself when I was diagnosed with my first brain tumor, I would not be alive.

I know from experience that advocating for yourself at doctor visits can feel daunting, especially when dealing with chronic illness. However, by preparing ahead of time, communicating effectively, and following up, you can ensure that your voice is heard and your healthcare needs are met.

Remember, YOU are the most critical member of your care team, and your input is invaluable.

XO, Indie