Taking notes is a lesson, especially for me. I can always go back to those notes to refresh my memory. Whether I’m actually in the presence of someone like a Patient Leader or Conference classes, or just visiting a patient in the hospital, I just take notes. It’s always great to just jot keynotes you’ve heard that can help you and your mission as a Patient Leader or advocate.
3. Do Not Be Ashamed
Many people living with a disease or an illness, are afraid to talk about it. They are worried about the way people will perceive them. Will they think I’m weak? Will they want to be around me if they know I have an illness? These are common feelings of people that I have talked to.
As a survivor, I too understand what it feels like. I felt like telling a date or a new friend that I have epilepsy, may cause them not to want to further our relationship because they don’t see me as “normal.” Some have walked out of my life after finding out and that’s fine. I have more people who have remained in my corner. I choose to focus and be thankful for that!
Showing others that you are not ashamed of your condition gives others strength. You never know who’s watching! Feeling as if you’re alone is a common feeling but in actuality, epilepsy is the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer’s disease. About one percent of Americans have some form of epilepsy, and nearly four percent (1 in 26) will develop epilepsy at some point in their lives.
Using social media has allowed me to tell my story and granted me access to people who I wouldn’t otherwise know. Often when I post whether it’s a seizure, new advances in treatment, or a way to get resources I’m often thanked for being so transparent and using my platform in a positive manner.
4. Reach Out To Others
As I said in the aforementioned paragraphs, social media allows me to reach people I otherwise wouldn’t be aware of. It allows me to build “personal” relationships with people that may be on the other side of the world! However social media doesn’t take place of things that I actually do in the community. Visiting families and patients in the hospital provides a huge joy for me.
Angels Of Epilepsy has monthly newsletters and we love to feature survivors for them to tell their stories. We send out an invitation and ask if they would like to have their blog or an article in our upcoming newsletters. Some have said, “Yes”. But there are some that may not respond or simply says, “No thanks or not yet.” So be prepared for that if you’re reaching out to others in the community you advocate for.