Preparing for Appointments

With most rare disease it is essential to become your own advocate or have someone (friend, family member, partner) help you advocate for yourself. Well in advance of doctor’s appointments, I start making a list of questions that I want to ask so that I don’t get flustered and forget during the appointment. Taking someone to appointments as a “second set of ears” to help remember what is said and to help ask questions can be valuable. I even sometimes take recently published, peer reviewed scientific papers with me to appointments to share with the doctor. With large caseloads and busy schedules, they may not have seen the latest reports and they may be open to discussion.

Make an Appointment Checklist

• Keep notes of your symptoms (using a symptom tracking app can help)

• Make a list of questions in advance

• Don’t be afraid to ask questions

• Take notes or ask if you can record the discussion

• Take a support person with you to help ask questions/listen/advocate

Try not to be discouraged if a health provider dismisses your reported symptoms – continue to ask questions, advocate and seek other opinions as needed