I recently took part in an online meeting with two friends and fellow patient advocates. We met through the Project LEAD Institute program in July of 2017. Why did we apply for scholarship and attend this intensive week of the study of breast cancer biology? We all want further training to improve our advocacy knowledge base, so we could better serve our communities. The focus of our discussion at our online meeting; “Why do we choose to be patient advocates”?
Kirstin, Jennifer, and I remain close friends. We talk frequently via phone chats, texts, and emails and ask each other for advice. We seek resources when we cannot find them for our community who might be in need. Opportunities for new learning, conferences to attend, and sharing new studies are just a few of the advocacy tools we share with each other to stay on top of our game. Our bond is through a mutual life experience none of us want to be a part of, being diagnosed with breast cancer. Jenn, Kirstin and I all had breast reconstruction. I had DIEP flap and Kirstin and Jennifer had implant-based reconstruction. This gives us a lot to discuss in our advocacy with breast cancer patients.
Our conversation emphasized how to reach those who seemingly get lost in the medical maze for a variety of reasons. We attend conferences and speak to other advocates and often hear the same concern. We are informed and passionate about what we do. What troubles us most often are those who don’t have a voice, the resources, or support it takes to make difficult, complex medical decisions, ones that often accompany a breast cancer diagnosis.
Here is what Kirstin and Jennifer shared with me.
Why Are You a Patient Advocate? ~ Kirstin Litz
When I think about it I would not say it is something that I chose. Being an advocate chose me. Back in 2001 I had a friend who was diagnosed with breast cancer, the internet was of no help and I felt at a loss when I could not help her understand. Basically, I could be there for her, check on her, and be a friend. Not a comfy feeling. So, I started to learn more and more. Once I was diagnosed I kicked up the learning and the doing. And when I am not in the mood to do it, I remind myself it is not about me.
“Because I can” is another reason.
What is Your Biggest Challenge Being A Patient Advocate?
Finding the time, I would like to be able to advocate more. It is not a paid position, nor do I punch a clock. However, every time I hear that someone else has cancer, no matter the type, my brain says that is one too many. With all the money that is spent and the technology that exists my heart feels we should be closer to a solution. Cure maybe not, prevention, yes or at least ways to diagnosis early when treatable and not life threatening.
Not having the answer. Or at least a good response.
What keeps me going? Hope, Faith and Love.
Why Are You a Patient Advocate? ~ Jennifer Elliott
It’s basically my medical oncologist’s fault I became an advocate. I would go to my appointments with scores of questions in my notebook. He would look at me after answering each question and say, “next.” And then, “did we get them all?” At some point during my treatment, I think after I told him “You suck” at survivor-ship care, he told me I was an advocate. And I laughed.
So, it took me a few more months to come to terms with the undeniable truth he had laid in front of me. I continue to advocate because I get angry when I see the disparities in care that exist simply because people don’t always know the right questions to ask or have access to the care they prefer. My anger is motivating me to pursue a graduate degree in public policy because all the things I’m advocating for are impacted by policy, so if I can impact policy I can make a more meaningful impact for patients.
What is Your Biggest Challenge Being A Patient Advocate?
I can get in my own way sometimes. And getting out of my way can be challenging. For instance, I can get anxious and nervous and shy when I’m at a conference or meeting someone for the first time. I don’t want to say something dumb. But the only way to learn is to jump in and start talking to people. So, I have a set of questions in my back pocket I mentally pull out to help me get the conversation going. Also staying motivated. That can be hard sometimes too.
My Thoughts: Why am I a Patient Advocate?
I advocate to help others through a process I had only family support for at the time. This does not diminish the selfless love shown by my family. However, I use the word, “only” because I didn’t have others advocating for me or survivors to talk to online or in a support group. I think it is crucial to find honest, knowledgeable, compassionate support outside your family. As well-meaning as family is, it helps to talk to those who have been through it, who have walked the walk.
What are My Biggest Challenges Being a Patient Advocate?
The most challenging part for me is my perceived lack of time and patience. I want to find solutions for others as quickly as possible. It often takes time and I must be gentle and caring while I assist other women and men finding help and answers. Patience is a well-used virtue in the breast cancer and breast reconstruction process. It’s not always easy to wait, find a resource, physicians, or someone who knows how to guide you through the breast cancer and breast reconstruction process. When I help others, I feel this same sense of anxiousness for them.
Breast Cancer: Why We Choose to Be Patient Advocates
I hope you read the blog and understand why we chose this. There are many passionate, driven, selfless, determined patient advocates in the breast cancer community. It is an honor to call these two my friends!
