Getting the most out of your doctor’s visit for a rare disease can be quite challenging. Needless to say, it is critically important to be well-prepared and ensure that you accomplish everything that’s needed.

Below are some tips that you might find useful for your visit. 

1. Prepare your medical history.

  • Symptoms/complaints. What are your complaints or the symptoms that you are experiencing? Make a list of everything, even the most seemingly unimportant ones, including when you started experiencing them and how often. Do you notice the symptoms after eating certain food or doing certain activities? Do you experience them usually at nighttime or daytime?  
  • Existing conditions. Also, if you have existing conditions, put them on your notes as well as when they were diagnosed, the medications you’re taking including the dosage and the other treatments you currently undergo. 
  • Previous surgeries. Have you had surgeries in the past? When were they conducted and what for?
  • Allergies. If you have any allergies, put them on your list and describe exactly what happens.
  • Past medications. Also take note of any medications that you have stopped taking and the reason why you no longer take them. 
  • Recent blood work and other tests. Have you had any tests recently like radiology? Include them in your notes, the dates, and the reason why they were requested.
  • List of doctors. Who are the doctors you have consulted in the past? Take note of their names, what you consulted them for, their clinic addresses, and telephone numbers.  
  • Medical records. Ideally, bring your medical records from previous visits. If you don’t have them, it would be good to request a copy from your previous doctors, make a duplicate copy, and organize them in a binder with clear pockets. Getting all your records, however, might take a while and would require you to fill out request forms so it would be better to prepare them in advance.

2. Ensure that your concerns will be addressed and properly recorded.

Going out of the doctor’s clinic and then suddenly realizing you forgot to ask a couple of questions or forgetting what the doctor explained can be frustrating. To avoid this, prepare the following before your appointment:

  • An audio recording device. Having an audio recording of everything that you have talked about during the appointment will definitely be useful. You can go back to it to verify information and ensure you are following instructions correctly. Before the appointment, test the audio recorder, make sure that you’re using fresh batteries, and that you have enough space in the memory card.

  • It’s possible that you don’t have an audio recorder other than your mobile phone. This is also an option but you might want to set it on flight mode before your appointment, charge the phone, check the memory space, and test it beforehand.  
  • A pen and a notebook. Whether you’re bringing an audio recorder with you or not, it is still a must to have a pen and a notebook during your appointment. First of all, in the event that your recorder malfunctions (which can happen), you still have a record of the things that you have talked about. And even if it works properly in the end, you will still find your notes useful when you review the audio recording. You might have to skip listening to some parts and with your notes, you would have an idea which part of the recording you’re looking for.  
  • List of questions. Before the appointment, make a list of all the questions that you would like to ask your doctor. Write them down in bullet points so you can easily tick off each one. You might also want to leave some space in between questions where you can write notes.
  • Pro tip from co-ED Clasina: Make two copies of your list of questions, and give one to the doctor as an “agenda”. This makes it less likely that items will be missed or you will “chicken out” of discussing a touchy topic for you.

3. Aside from the items listed above, remember to also bring the following:

  • Your driver’s license or any government issued ID
  • Insurance card or information
  • Necessary insurance referrals

Now that you’re ready for the doctor’s visit, just a reminder that your doctor is working for you. In case you feel that they are not listening to your concerns or if you have doubts on their recommendation, you can always look for another doctor, someone you can trust and are comfortable to work with.