Being Your Own Patient Advocate
Today I had the great pleasure of giving a speech at Norton Healthcare in Louisville, Kentucky. It was a quick 36-hour trip from Santa Barbara to Louisville and home again. The Silver Lining is that I was only away from home for one night. It was quite a schlep to travel between three time zones, four flights and three states, but completely worth it as I had a great time and had the opportunity to meet a terrific group of people.
One of the things that I discussed in the talk was how to be your own advocate, especially after a diagnosis.
As I mentioned the other day when I was discussing how to navigate the healthcare system, the truth of the matter is that between my diagnosis and beginning treatment, I felt lost, as if I were standing in the middle of a dense cobweb-filled forest, one in which I had never been. I had no idea where to turn or how to proceed. Though my nursing had prepared me to understand the science behind my diagnosis, nothing could have prepared me for the emotional f-bomb that would come with it. The Silver Lining for me was that my compensatory mechanism was to put on my nurses cap and treat myself the way I would a patient.
Here are a few things that helped me advocate for myself and I hope will help you, if you ever need it (though I certainly hope that you don’t!).
- Build & Engage Your Healthcare Team. Become an empowered health care consumer. Interview the people with whom you will be entrusting your care. Feel comfortable and confident. Trust your instinct.
- Understand Your Diagnosis/Illness. Please don’t use Dr. Google as your guide. Rather ask your health care team for trusted and reliable sources of information and then dig in and learn as much as you possibly can.
- Ask Questions. Lots and lots of questions. Be sure to write these questions down before going to each and every appointment. If you don’t, Murphy’s law will guarantee that you forget something. Trust me. I know.
- Know What to Expect/Be Prepared. I have written a ton about preparation. This is so so so important and will help you enter each phase of treatment feeling – at the very least – somewhat prepared.
- Keep your Medical Record. Right now, it’s still the old fashioned way of building a file with papers. From the time of your first appointment, begin to accumulate your documents in chronological order. Include all test results and reports. Take your record with you to all of your appointments. The Silver Lining is that there is new, exciting technology that is coming down the pipeline that will enable you to carry your record with you on your personal device (e.g., phone and/or tablet).
- Know Your Medications: what they do, dosages, etc. Also, be sure to record when you take medications and how they make you feel. This is really helpful for assessing what works making changes when medications don’t work.
- Understand your Medical Insurance Policy. Ideally, prior to starting treatment, call your insurance company and learn about what benefits you have and which physicians will be covered. The thing of it is that you can always ask for help with insurance and bills. Some fees can be discounted and negotiated. There are some great organizations that have financial assistance programs & resources. One example is the Patient Advocate Foundation.
I’d love to hear what helped you as you entered this simultaneously complicated and incredible health care world?
* Photograph by my dear friend, Elizabeth Messina