The end of the year is often a time for reflection. Many moments make up those 365 days. We asked patient leaders to think about the last year. On the Social Health Network Facebook page, we asked, “In terms of advocacy, what are you most proud of this year?”
Patient leaders made many strides in advocacy efforts throughout the year!
Presenting at conferences
National conferences take many patient leaders out of their comfort zone. Speaking in front of large gatherings is both scary and rewarding. Conference work was definitely a major source of pride.
“Advocating during Allergy and Asthma Day on Capitol Hill!” – Andrea Jensen
“I’m most proud of taking the stage at the International Conference on Stigma in Washington, DC.” – Derek Canas
“I did my patient story at the Clusterbusters conference in Chicago! I’ve never been a public speaker, but I did it!!” – Anna Williams
“Speaking at the AASLD (American Association for the Study of Liver Diseases) conference and sharing my story.” – Kimberly Frank Nash
“Speaking at the International Hispanic Parkinson’s conference.” – Maria De Leon
Patient leaders grew their visibility in their communities. New opportunities opened to engage in their areas of passion. Their advocacy efforts are meeting vital needs.
“Moving to a new rural area has been a challenge. But, I’m thrilled to have connected with organizations that are embracing me and my advocacy for more accessibility, especially in nature.” – Leslie Krongold
“As a result of my becoming a regular writer for the CPTSD Foundation, I was asked to co-create an educational module for a medical school to help medical professionals understand patients who live with complex PTSD.” – Lee Frost
Patient leaders tackled fundraising projects for their chronic and terminal illnesses. Raising awareness and funding treatment and research is critical. Future progress depends on current efforts. Patient leaders work hard to effect change.
“The license plate bill we had introduced is helping men with prostate cancer get the medications and treatments they need. With 23 license plates on cars, it has raised $975 this year.” – Linda Hoetger
“I took part in a fundraising calendar (photo shoot) and a charity zip slide over the River Clyde. Both big steps out of my comfort zone in different ways.” – Amanda Mckinlay
Advocating for my needs
Speaking up at the doctor’s office is not easy. Too often, doctors dismiss or ignore symptoms. Patient leaders shared their pride in standing their ground. Self-advocacy was a step they took in 2022.
“After 2 years of being ignored, I finally advocated for myself.”
“Saying no to tests for a surgery and asking to speak to another consultant about it first. Not easy.” – Ellie Hazel
Helping other warriors
Part of advocacy is helping others. Sharing personal stories of chronic or terminal illness offers hope. Connecting with others shifts the narrative. Everyone feels less alone with their symptoms.
“Even though my own health has faltered so badly this year, I was still able to do a good deal of advocacy, especially out in my community. People that saw me always asked, and I was able to relay that information to some who were suffering the same, others who wanted to know more, etc.” – Rhiannon Steele
“I was finally able to really tell my story to help other people who have walked in my shoes.” – Diane Talbert
“I’m a proud leader of Diabetes Sisters, and I absolutely love to encourage these beautiful ladies on their diabetes journey.” – CJ Walker
“I’m most proud I helped 2 clients get on SSDI [Social Security Disability Insurance] this year, both under a year after starting their applications.” – Alison Hayes
“My ability to teach people ways to navigate life with epilepsy and how to see themselves in a more positive light.”
We appreciate all your advocacy efforts in the last year. And we look forward to hearing more about your successes in 2023!