Educate Yourself

EDUCATE YOURSELF

  • Your job right now is to learn what you need to learn to make great medical choices for yourself.
  • Difficult diseases have many different layers that impact prognosis and treatment. Get to know the subtleties of your specific disease so you can make the best decisions possible.
  • There is such beauty and serenity in this. Stay focused.

How to Educate Yourself

  1. Read through everything your doctor has given you.  
  2. Take notes as you read. 
  3. Look up terms you don’t understand. Understand the specifics of what is happening in your body.
  4. Ask your doctors where they recommend you learn more about your disease, but tell them you want more than just the oversimplified websites. You want to be truly informed. I found it valuable to read the latest medical journal articles, too.
  5. What you want to learn is:
  • What are the latest discoveries? 
  • What is the cutting-edge treatment for your disease?
  • Ask your doctor about them on your next visit.  
  1. Utilize Google as a tool to learn about the potential layers of your disease. Let Google help you build good questions for your doctors, but know that some info on Dr. Google is bogus. What you see might not apply to your case. Always check with your doctor.  
  2. Check out reputable websites like clinicaltrials.gov and the National Cancer Institute to find out research trials ongoing around the country and globally. Ask your doctor if any of this applies to you.
  3. Other patients can share wisdom, but be savvy about that advice: 
  • Distinguish between your case and your neighbor’s. Just because something was good for another patient doesn’t mean it will suit your specific condition.
    • For example, if your diagnosis is cancer, know that no two cancers are exactly alike because of the genes behind them. Even if your cancer has the same name as another patient’s, it is different in many ways and may be treated much differently than another patient with the same type of cancer.
  • Don’t get anxious if your friend’s treatment plan is different from yours, but if those differences prompt questions for your doctor, ask them!
  • You can gain treatment tips and support by talking with those who have traveled this road before you.  
  • Questions to ask other patients:
      1. What helped them? 
      2. What do they wish they had known?  
      3. What would they do the same, and what would they do differently?
  • Take notes on your conversations with fellow patients in the same way you would for doctors. Write their name and the date of the conversation at the top of the page of a legal pad. Staple and insert those notes into the “fellow patients” section of your binder.
  • Highlight any tips they give you for your treatment. 
  • Transfer all tips into a separate “treatment tips” section in your binder, which is easy to refer to once treatment is scheduled.