10 Questions to Ask Your Doctor When You Are Newly Diagnosed

It is often hard to know what to ask, or even where to begin, when you have questions about a new diagnosis. Many community members on this site talk about feeling overwhelmed and nervous at their first appointment. Here are some of their tips for finding your way through the early stages of your diagnosis of a rare disease.

Organize the thoughts in your head

The doctor should ask if you have questions or concerns. But, it can be hard to ask a question if you do not know where to start. You may not know enough about your illness to know what you should be asking. It is common to feel confused about where to start.

It can feel very hard to put words to the thoughts swirling around in your head, especially at that first appointment. It may feel as if you do not know what you are confused about. You may not think of a question or concern until you have left the building. This is why you often see the suggestion to write down your questions before you go to that first appointment.

A million questions with no answers

No one wants to leave an appointment feeling like they have a million questions and no answers. This can lead to more anxiety, fear, and frustration. Pile that on top of an already complicated rare disease diagnosis, and it can start quite a downward spiral out of control.

The following list includes some common questions that may be helpful for your first few doctor appointments.

Remember, you do not have to ask all of these questions. These are ideas of questions that may apply to your life with a rare disease. Use these as a guide to get you through those first appointments to help you build your knowledge of this new diagnosis.

• What are my options for treatment and pros/cons of each?
• What will happen if I choose not to treat my condition at this time?
• Are there dietary or supplement changes you would suggest I make?
• What are the potential side effects of my treatment options?
• How are appointments, refills, questions, or concerns handled? What are the procedures for drug refills in particular?
• How often can I expect to be seen by the doctor for my condition? Will I always see the same doctor?
• Are there any other specialists I should add to my healthcare team?
• How do I access my test and lab results?
• Do I have to decide today on treatment or can I take a week and think it over?
• If I have a question or concern between appointments, can I call the office, email, or send a message through an app?
• If I am worried or sick due to the side effects of a new medicine, should I contact you or one of my other doctors? What would you consider serious enough to call?

When you know the right questions to ask, it is the first step to help you prepare for your journey with a rare disease.

A new diagnosis can be scary

Living with a new diagnosis can be scary. It can be hard to know what to expect. You may feel like you are learning a foreign language at first and in some ways you are.

Test results, medicines, and their side effects may be hard to understand at first. You may feel like making an educated decision about your health is impossible. Keep in mind, you are at the very start of this journey. Soon you will be an expert in your own care.

What questions do you wish you had asked at those first appointments when you were newly diagnosed? Let us know in the comments!