Community Views: Becoming a Patient Leader

The journey of advocacy takes many twists and turns. For some, it is easy to get started, while for others it takes time to find a niche. Reaching the point where you identify as a patient leader can take time. Ultimately, you realize that you are having a real impact on the health and well-being of others.

We wondered about your journeys to becoming patient leaders. So, we recently posed this question to the Social Health Network Facebook group: “What was the moment you realized you were a patient leader?”

We got tons of great responses! Here are a few of the themes that emerged.

Hearing from followers

Receiving messages from others helped many of you feel like leaders. Knowing that your story affected their journey felt transformative for you and enabled you to claim your role as a patient leader.

“The first time I received a message from a follower stating that my story of how wearing open-toed shoes to a rheumatology appointment for another condition led to my psoriatic arthritis diagnosis helped her get diagnosed.”

“The first message I got from someone saying I had helped them.”

Participating in a conference

A few of you began to see yourselves as patient leaders when you were invited to participate in health conferences. Having others identify and request your expertise affirmed your skills.

“It was the first time I was invited (and paid) to speak at an international conference for hundreds of communicators who worked for a single healthcare company. The number of conferences, patient panels, review panels, opinion boards, advisory boards, steering committees, governing boards, government relations committees, meetings with lawmakers and their staff, just for fun meet-ups with other patients, etc., that have occurred since that first trip, I have no idea.”

“I realized I was a patient *leader* when people recognized me at a conference and when I was asked to contribute to videos at the same event. The recognition made me see I did have an impact.”

Doing advocacy work

Advocating and educating at a civic level was a key moment for several of you. You may have publicly shared your story, informed others about the disease, and pushed for awareness and funding. Engaging in this way helped you feel like a patient leader.

“We decided to get more involved in activities to help to increase lupus awareness and raise funds for research that we hope will lead to more success in accurate diagnoses, better treatment plans, and eventually a cure.”

“I trained volunteers how to tell their stories in ways that could move legislators and donors. I immediately put the skills I was teaching to use to share my own story.”

“When I took the microphone during a town hall meeting and started sharing my diabetes story. At that moment, that was when I realized that my voice could potentially make a difference.”

Communicating with doctors

Several of you found your voice when advocating for yourself or others with a doctor. You spoke up, voiced your concerns, and fought for access to the services you needed. You became a leader by creating change at the doctor’s office.

“My partner was in a car accident and experienced a TBI that continues to impact him to this day. I managed his care. Several years later, he shattered his acetabulum and then watched in awe as I used my skill set to get him the care he needed, including transferring him to the top orthopedic hospital in the country and getting him properly diagnosed (which took about a year). He pointed out how skilled I was.”

“When I told the emergency ER gyno, ‘If you don’t operate on me, I am going to die, and my family will come for you,’ after being admitted for the seventh time.”

“When I couldn’t get the help I needed as I struggled with a multitude of what was being interpreted as individual symptoms without looking at me as a whole person.”

Telling your stories

Living with chronic or terminal illness can feel overwhelming. But many of you created purpose from the struggle by sharing your story. You became a patient leader by using your voice to lift others up.

“I had an ‘aha’ moment that I couldn’t let all of what I was going through be for naught and that I needed to help others. I wanted to start sharing my story to help even just one person the way that countless other patients and caregivers online had helped me get through the toughest days of my life.”

“When I was able to share my stories about my own struggles with multiple sclerosis. I knew my symptoms were more powerful when I spoke about them. It almost made it worth going through the hard times, knowing I could help others by talking about it.”

“I had been sharing information about different awareness days and information about cancer. Friends started thanking me for informing them. I realized this was my passion.”

“When I started with a Facebook group of 60 women with breast cancer that grew to over 10K in 6 months! This wasn’t my intention to grow a group, but there I was.”

Thank you

We appreciate everyone who shared their journey toward claiming the title of patient leader! You benefit so many people through your stories and advocacy.

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