How do I begin?  

Start by asking what exactly are you dealing with?  What is the name? Ask for plain language. It’s ok to ask your provider to repeat things.  Write them down or use your phone to record.  

• Language is important – if you need an interpreter, ask someone to come with you or request interpretation at your appointment.  

• You want to know how your provider is sure this is your diagnosis, could it be anything else?

• Are there other tests that you're going to need to take for further information? Ask your provider if you should consider a second opinion.

• Is your illness curable or manageable? How does it progress? What should you look for to indicate that things are going better? worse?

• You want to know your treatment options.  What will care look like? What are the risks? What are the benefits of treatment?  What does your provider recommend?  What if you do nothing?  When do you have to decide how you are going to move forward?  How often will you need to come in? How often will you need to have labs? 

• What are the side effects of the medications?  How is my daily life going to look? Will I be able to do my usual activities?

• Are there resources – groups, people I can speak with (social worker, therapist, palliative care team)? Are there support groups for others dealing with my diagnosis?

• What’s next?  Who will help me navigate this system?  Who can I call with questions?

This is an exhaustive list of questions that you will not likely get through in your first visit (except in a palliative discussion, this fuller conversation is very common). But it is important to know the questions you might have are neither dumb nor silly. At another time, I will talk about how different cultures approach engaging with medical providers, but it is important to know that when you are advocating for yourself, you always have the option of asking questions.

When you are receiving a new diagnosis, you want to know not only what you are dealing with, you are also developing a relationship with a provider,  The more trust you feel with your provider, the more confident you are as you move through the treatment.

“Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:  What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you're willing to make and not willing to make? And what is the course of action that best serves this understanding?”            Dr. Atul Gawande