Community views. Becoming a sick leader

The journey of advocacy takes many twists and turns. Some find it easy to get started, while others take time to find a niche. Getting to the point where you recognize yourself 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 were interested in your journeys to becoming a patient leader. 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 some of the topics that came up.

Hearing from followers

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

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

“The first message I got from someone was that I helped them.”

Conference participation

Some of you began to think of yourself as patient leaders when you were invited to attend health conferences. Finding others and asking for your expertise validated your skills.

“It was the first time I was invited (and paid) to speak for hundreds of communicators working for one healthcare company. Held at conferences, patient panels, review panels, opinion boards, advisory boards, steering committees, governing boards, government relations committees, meetings with legislators and their staff, just for fun meetings with other patients, etc. 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 participate in videos at the same event. The recognition made me see that I really had an impact.”

Carrying out advocacy work

Advocating and educating on a civic level was a highlight for some of you. You can share your story publicly, inform others about the disease, and push for awareness and funding. Being involved in this way helped you feel like a patient leader.

“We decided to become more involved in events to help raise awareness of lupus and raise funds for research that will hopefully lead to greater success in accurate diagnosis, better treatment plans and, ultimately, a cure.”

“I coached volunteers on how to tell their stories in a way that would resonate with legislators and donors. I immediately put the skills I was teaching to use to share my own story.”

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

Communicating with doctors

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

“My partner was in a car accident and had a TBI that continues to affect him to this day. I managed his care. A few years later, he broke his acetabulum and then watched in awe as I used my skills to get him the care he needed, including getting 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 am.’

“When I told the emergency gynecologist: “If you don’t operate on me, I’m 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 because I was struggling with multiple symptoms that were interpreted as individual symptoms without looking at me as a whole person.”

Telling your stories

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

“I had an ‘aha’ moment that I couldn’t let everything I was going through go to waste and that I had to help others. I wanted to start sharing my story to help even one person the way so many other patients and caregivers online have helped me through some of the hardest days of my life.”

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

“I was passing on information about different awareness days and cancer information. Friends started thanking them for their information. I realized that this is my passion.”

“When I started creating a Facebook group of 60 women with breast cancer, it grew to 10,000 in 6 months. It wasn’t my intention to grow the group, but I did.”

Thank you

We appreciate everyone who shared their journey to becoming a patient leader. You benefit so many people through your stories and advocacy.

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