Being Your Own Patient Advocate

The Silver Lining

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!).

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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).
  6. 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.
  7. 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


  1. These are some great points to follow to be your own advocate. I would probably add that when your mind feels like it is listening through cobwebs, you may want an associate advocate. I used my daughter who is a nurse; right off she spared me having to get a port. She told the doctor my veins were good and since I would only, (only!), have 4 rounds of chemo treatment, wouldn't he agree that I didn't need a port implanted. All I did was nod yes as my daughter advocated for me; and my oncologist concurred. Also as one of my doctors reminded me I had not enlisted in the Armed Services so I could do or not do whatever I wished. They could recommend a course of treatment, but I would have the final say. For example, after 5 years of taking tamoxifen and arimidex, I had had enough and decided to stop; my doctor had wanted me to stay on them longer, but I had had my fill of aching joints, night sweats, etc. He concurred with my decision.

  2. Hollye, Such important points. The other one I learned was not to be afraid to ask for a second opinion. It's a little daunting to "second guess" your surgeon/healthcare team, yet when you're in the middle of these very important decisions, you really need to make sure you're weighing all of the options. I found that rather than taking it as a personal insult, my doctors were fine with it. In fact when I brought it up with my breast surgeon right before making my decision about whether or not to have a bilateral mastectomy, she agreed that it was a great idea and was fully supportive. At the end of the day, the 2nd opinion completely validated what she had recommended, so I elected to have her perform the procedure anyway, but it was reassuring to know that 2 experts agreed.

    1. THank you so much for your comment, Claudia! Excellent addition! I wholeheartedly agree and received 2nd opinions multiple times!. Thank you again.

  3. I’ve just begun the journey as I was diagnosed last week. I need all the help I can get! For my spouse too…. Lori

  4. Good points: I would add:
    Patients have rights:
    1. to make your own decision
    2. to second opinion
    3. have all questions fully answered by your provider or his/her staff
    4. insist the doctor followthrough on his/her promises/agreements/statements
    5. know the doctors financial relationship to his therapy program.
    6. know what your care will cost before treatment.
    7. change providers without penalty.

  5. would you say that these rules would apply when dealing with pain management care? I have chronic/intractable pain – when I was 18 I was in a car wreck, broke my back and had Harrington Rods placed in my lower back to “fuse” the bone – 20 years later – horrible pain started (almost out of nowhere) and we finally found out – those rods & their screws were 2 to 6 inches away from the original placement during surgery 🙁 My xray looks like pick up sticks have been thrown around my back. Its 14-15 years later now … for years I “just trusted” my healthcare professionals and if I didn’t “like” the physician / staff … I would go to another doctor – I didn’t do that a lot (or what “I” would consider often) maybe 3 to 4 times in a 7 year time frame. But now, I worry that it looks like I was doctor shopping. All the rules are so different when it includes pain management 🙁

    Anyway – now I’m being told the best thing to do is to place a neurotransmitter into my back/spine area. As you can imagine – I’m a little skeptical about a foreign object in my back – yes, I know right NOW they say this unit is helpful – that’s what they said about the rods back in 79. 🙂 My “intuition” (as you mentioned above) is reallllllllly doubtful about this procedure and I’ve decided to go in head first and take over my healthcare … I’m not so trusting today as I was at 18 🙂

    So – would you apply these same rules toward those in pain management care?
    This may not be something you could answer and I totally understand.
    This is a great site … and has given me much to think about.
    Thank you for taking the time to share this information.
    I’ll look forward to your answer.

    1. Dear Vicki,
      Thank you so much for sharing your story. In terms of decision making, this is ultimately up to you. When it comes to my own care, I do indeed follow my intuition after gather every possible bit of data and doing the analysis. I think that when a person becomes her own advocate, it is definitely a silver lining!

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