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5 Tips for Becoming a Patient Leader

 

In the almost two years since I was introduced to WEGO Health, the exposure and assistance I have received is unmeasurable. Becoming a Patient Leader to better interact with our community has been nothing short of remarkable. I’ve been introduced to meeting many survivors here in the U.S. and around the world.

To say becoming a Patient Leader with WEGO Health has given me courage is an understatement! It has truly given me hope. One thing that really fueled me was having the opportunity to attend the HealtheVoices Conference in Chicago (April 2018).

Meeting so many survivors and advocates dealing with different types of illnesses and medical disabilities was immensely empowering. Being able to be surrounded with so many amazing, beautiful spirits continuously, encouraged me to keep going and not give up. If I were to compare myself to a vehicle, WEGO Health would definitely be my wheels because they keep me in motion!

When speaking with many survivors, a common sentiment is the feeling of embarrassment and being ashamed. They fear being looked at as weak or inferior. Personally, I’ve battled with these feelings as well. I have found enormous joy in speaking about my condition. I encourage all survivors to speak out about their illness and educate others! You never know who needs to hear exactly what you have to say.

 

1. Tell Your Life Story

You were given this life because you are the chosen one. I’ve realized that dealing with Epilepsy and the challenges I’ve faced over the many years, may have hurt me but it also made me stronger. And it can do the same for you!

I’ve found joy in speaking out about my condition. Having a support group and outlets to speak openly about living with epilepsy, could help some who may not have had those experiences better prepare for what may come.

Since starting an advocacy team, I’ve been asked by many epilepsy survivors, how do I feel when I speak about it or how do I gain the confidence? I tell them after being ashamed about my situation, I realized that I was placed here to tell my story! Despite feeling afraid, have the courage to speak about it.

I believe this quote best sums everything up: “Courage is resistance to fear, mastery of fear – not absence of fear.” -Mark Twain

 

2. Take Notes

As you connect with and meet new Patient Leaders, you hear so many different stories and it gives you the courage to not be afraid and just speak. I often find myself taking notes on their stories, experiences, insights, and inspirations.

Speaking to other survivors and hearing their stories gave me a major confidence boost in my ability to speak and advocate for others like myself. I love hearing about the courage of others who get up every day and handle their business despite having epilepsy. When I’m down, I often find myself reading the notes I took as a form of uplifting myself.

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.

Using social media has allowed my story to reach many and grant access to people who I wouldn’t otherwise know. If it wasn’t for Instagram, Facebook, and Twitter people may not know of the work I’m doing, available resources through our charity and much more. So reach out to your followers and other leaders or advocates, and share your life experiences.

 

5. Trust That Your Voice Matters

I advise all survivors and Patient Leaders to trust that your voice matters! Being the chosen one and dealing with this battle, you have the perfect topic to speak about. Speak about the positives, negatives, things you wish you could change, and anything else you feel is important to you. When I started to speak about my life experiences with epilepsy, I was a little afraid. I wondered what some people may think of me. Surprisingly, there are so many people in this community that actually thanked me for speaking out.

Trusting your voice to speak out, could actually save a life! A teen I know of was battling epilepsy and was being bullied at school. He called our charity and said he wants to give up on life. Through his tears, he informed me that he no longer wanted to live. I advised him to stand tall because he was the chosen one. I told him that he can tell others about his life challenges and also educate them at the same time. Some may not know until they actually hear it about it.

He called me a month later and stated that he took my advice and spoke with teachers about telling his story to classmates. He talked about his diagnosis, his challenges, and his feelings. He told me that his classmates actually listened. There are some that now understands his battle. He said that he does see a little change but he is tested at times. I advised him, the more he speaks, the better it will become. It may be a process but it can change for the better just by trusting that your voice matters!

When I am called to give my testimony, I speak with confidence, pride and I’m certainly not ashamed.

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