By Rod Ritchie
We all belong to the SurvivingBreastCancer.org community for different reasons. Many are variously curious and seek information, some of us are patients and caregivers or friends and relatives, some have lost loved ones to this disease, while others may wish to support a breast cancer charity. We also seek to learn from medical professionals, such as surgeons, oncologists, physicians, and other experts in the field.
Regardless, every so often many of us feel a calling to become patient advocates.
Being a patient advocate is satisfying, and advocating for anybody diagnosed with breast cancer very often means the patient has a partner throughout the stressful diagnosis and initial treatment phases. It can also involve giving practical support, from basics such as household chores and meals,
to assistance when transport to medical events is necessary.
Most importantly, it can mean sitting in on doctor appointments where another pair of ears can be invaluable along with a notepad for all that information. This is information that the patient often just doesn’t either comprehend or even properly ‘hear.’
My Advocacy Story
After diagnosis in 2014, I was a regular poster on BreastCancer.org, one of the few communities that welcomed men. With a marketing and IT background, I soon worked out that you could reach a lot of people with the right forums. At the start, I was learning from the experiences of others, in later years, after training and learned experiences, I put newly diagnosed men in touch with the support systems developing on the various social media platforms, most of all Twitter and Facebook.
While the traditional print and electronic media are still effective outlets, social media is the perfect platform for international patient advocates to engage with patients and medical professionals. It’s very easy on Twitter to reach out to the clinical and research communities around the world to spread your message. That said, at no time should a patient advocate give medical advice.
In the beginning, I could see that most people just wanted someone to talk to, and that was fine by me. Isolation, lack of knowledge, and just plain embarrassment were what very many men felt. Knowing someone was out there having lived their experiences was often a great comfort. Looking for more opportunities, I underwent training as a telephone counselor for people in various stages of treatment. Often these people lived in remote areas. When an opportunity came up for volunteers at the local hospital infusion room, I jumped at the chance to sit with people at this stressful and vulnerable time. My introduction line was, “I’m just here to support patients. If you like to talk, fine, if not I’ll move on.” This had a 50 percent success rate!
After attending conferences for patient advocates, I was fortunate to land a scholarship to the NBCC Project LEAD course in San Diego in 2018. In 2019, I received a scholarship to attend SABCS19, where I was impressed by the kindness of the many women who are mostly the patient advocates in this field, and who I only knew online.
One thing leads to another. Now I’m writing articles, making videos, giving talks, and editing the stories from men for the Male Breast Cancer Global Alliance. I occupy a niche in breast cancer advocacy, and I’m always amazed at the number of medical professionals following me on Twitter.
What it takes
Patient advocates need to look at and respond constructively to different positions and issues, bounce back from negative or unresponsive patients and, most importantly, be resilient enough to handle the trials and tribulations of our disease along with that of the people they are trying to help.
The best patient advocates:
always listen and learn;
are open to different ways to share messages;
value support from others; and
partner with like-minded individuals.
Basically, I believe patient advocates have much to gain psychologically from helping others. In fact, we are healthier and mentally stronger for it. That aside, if we’ve benefited from the help of others, why not pay it forward?
About Rod Ritchie
Rod Ritchie is a Sydney-born writer, internet publisher, and breast cancer patient activist, living with breast and prostate cancers. Currently he’s NED for both. He’s President, Board of Directors, Male Breast Cancer Global Alliance, has a website at MaleBC.org and you can follow him on Twitter @malefitness
His articles for Health Union can be found here: https://advancedbreastcancer.net/author/traveltext
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