Being an advocate — thoughts on what it means

I am an advocate by surprise.  I believe I join a group of thousands, maybe millions who would say the same. It’s what happens when tragedy strikes, and you find that you actually learn something, and you seem to have the power to make a difference, and sometimes the power to turn something negative into something positive. For me, it was like darkness with a ray of piercing light that I couldn’t take my eyes off of.

Many of you know my husband’s and my story, but for those who don’t, …

In March of 2000, my husband was diagnosed with prostate cancer with a PSA of 7,096.0, and widely spread bone metastases. He was in great pain, but also very stubborn, so the amount of pain he endured still baffles me to this day.  He was not one to go to the doctor — but he finally agreed to go to a pain doctor. Long story short, the pain doctor required imaging to treat his pain, and the journey started. Finally someone took a PSA and it was 7,096.0. I’m writing it again because you may not have believed it the first time — a common response I get.

After that diagnosis in 2000, my husband lived for 13 years.  I quickly became his advocate, the one who thought clearly in an overwhelming situation, the one who would look for clues, and dig for questions.  Within the first 2 years, I was leading in many discussions on choosing his treatments.  I was a restaurant manager at the time, and had no idea what a prostate was.  But I learned, and I learned about bones, and cancer, and more.  To this day, I still credit Dr Stephen Strum for helping me, and for hiring me at the Prostate Cancer Research Institute (PCRI) in 2001.  I left PCRI in 2015, and now work here — for Prostate Cancer International and The “New” Prostate Cancer InfoLink.

So — here is what I’d like to share after 15 years of advocacy and education … some of my key advocacy lessons when trying to help others:

  • Meet people where they are at. When helping someone else, you must listen (often for an extended period) to hear where they are coming from, and what their cancer is saying.  But you will help them so much more if you take the time to meet them where they are at, instead of hoping they meet you where you are at.
  • Medical records speak. Listen to them.  If you can help someone get actual copies, a list of actual copies they need, etc., you have helped them more than you know.  If you can help walk them through some of the important words in their medical records, you have empowered them more than you know.  If patients are to engage with their doctors in shared decision-making, then they need to understand their personal cancer — not prostate cancer in general. People don’t read or research their medical records because they don’t recognize the words.
  • Find the key, core issues that need to be addressed. This is another way of saying “pick your battles”, but if you’re trying to help someone who is dealing with a decision, they may already be overwhelmed. You can help by being objective and bringing some clarity. Help them find the key issues, not the little things that tend to work themselves out, or the issues that can be worked on later.
  • Help them find the next step, or two, or three. Sometimes that is all that an overwhelmed person needs. It brings clarity, and it encourages action. Feeling overwhelmed can make you freeze or shut down. Remind yourself that you will not be able to solve every problem today, and that is honestly not the goal anyway. The goal is to empower them, to help them.
  • Don’t give actual medical advice. Once you tell someone they “should do a certain treatment”, you have just overpowered their decision process, instead of empowering them in it. What if you’re wrong?  We can all be wrong — all of us. Instead, share with them what you know, based on what you’ve heard, after listening to them. Advise them in what you think they should research, or something to ask their doctors, but don’t advise them what they should actually do. Feel free to share your experience, but only the parts that relate to their situation.  Otherwise you run the risk of overwhelming them again.
  • Always advocate for something, not against something. There’s something about this simple mindset that helps me. Even in doctors’ appointments where we were both frustrated with the physician (yes, it happens), I learned to advocate for my husband, not against the doctor. It worked. It felt empowering.  And I walked out of the appointment with a sense of peace … that I had done the right thing, and it helped my husband, and that was the only goal anyway. Like a ray of light in the middle of the darkness.

To all the advocates out there — thank you for everything you do, for others.

Editorial note: Jan Manarite is the Executive Vice President of Prostate Cancer International.

2 Responses

  1. Brilliant, Jan — wonderful advice! Thank you.

  2. Well explained, Jan! As always, when I begin reading most any input by you I recognize from the onset that it is you. You have a way that is recognizable, particularly to those of us who, like you, became advocates for good reason. With a military career requiring research, study, and “leading,” I became my own advocate when my prostate cancer returned in 1996, 4 years after initial diagnosis and failure of surgical removal followed by salvage radiation. I wanted to make sure my subsequent treatment would be appropriate. I am sure that with you, as occurred with me, other men becoming diagnosed as well as their caregivers learned of us and the next thing we knew, we became more than advocates but additionally activists and mentors. Physicians like Dr. Strum and Dr. Snuffy Myers and Dr. Mark Scholz became known to us and we attended annual PCRI Conferences on Prostate Cancer to meet them, learn more, and become known to them sufficiently that we could communicate with them to help us address a problem presented to us by a patient or caregiver that our own research was unable to find. When you came on the prostate cancer community scene, Jan, I recognized immediately that here was a caregiver with a driven desire to learn all she could for the appropriate care of her husband. It was obvious the knowledge you were developing and continued to develop as the years went by. You certainly were the base from which your husband was able to survive those difficult 13 years from his diagnosis. And I, personally, am so, so proud of your continued involvement these many years in continued research and study and involvement to be there for yet the newly diagnosed, those with recurring prostate cancer, and their caregivers.

    You are blessed by God with the ability to accumulate the knowledge you have to help others.

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