Camila Coelho is among today's most influential voices in social media with millions of followers on Instagram, TikTok, and Twitter. She has also built successful cosmetics and fashion businesses. Now she is speaking out about accepting differences, overcoming challenges, and her life with the seizure disorder epilepsy. There are many forms of both epilepsy and seizures, ranging from mild to severe. This is Camila's story.
What were your early experiences with epilepsy like?
I was only 9 when I had my first seizure. I don't remember much about it, but I do remember thinking I had just fainted and being scared since I didn't know what had just happened. I was taken to the hospital and the doctors told me I had epilepsy. Thankfully, after my diagnosis, medication worked to control my epilepsy, and I had pretty much a normal childhood without more seizures or hospital visits.
Tell us about the turning point you had as a teenager.
When I was 14, my family moved from Brazil to Scranton, Pennsylvania, and everything was different. I started struggling when I was around 16 or 17. I was a teenager trying to fit in in a new world. At the same time, I was very much afraid that I could have a seizure in front of new friends. I found myself in situations that made me feel insecure and uncertain. I responded by trying to reject my epilepsy because I couldn't accept it. I stopped taking my medications and, after a few months, I had a seizure at my high school in front of all my friends.
I remember waking up in the hospital in tears. I knew I had done something wrong and had risked my life. I was so ashamed. But then I had an amazing conversation with my mom and opened up my heart to her. She said, "Camila, there are people fighting for their lives every day for many different reasons. There are many with epilepsy who can't control their seizures. You can control yours if you take your medicine. How lucky are you?" That was a real turning point for me. After that talk, I started to see life in a different way. Instead of complaining and feeling different, I started to feel blessed and lucky. I began to accept myself as I was.
Why did you decide to speak out?
I came to that decision recently when I started thinking about pregnancy and starting a family. That is when epilepsy came back into my life as a challenge. I knew it could impact my ability to get pregnant and have a healthy pregnancy. My doctor said that if I got pregnant without being on medicine, I could have a seizure and quickly lose the baby. I came to realize that telling my story would not only make me stronger but could also help others.
Going public was very scary. Only my family and closest friends knew about my epilepsy. There is still a huge stigma and lack of understanding about the condition. But it is the best thing I have ever done. I received so many messages from women who had epilepsy and had successful pregnancies while on their medicine. That gave me hope and strength. By sharing, I was able to help others. So many of my social media followers shared their own stories about living with epilepsy.
What healthy habits help you manage your epilepsy?
Getting enough sleep and controlling stress are really important for me. I try to sleep eight or nine hours a night. Also, getting outside, walking, biking, and playing volleyball to help relieve stress and get me more connected to myself.
What is your message to others who have epilepsy or other challenges?
Never lose hope. See yourself as someone strong. If you believe in the beautiful inner light that all of us are born with, you can be whoever you want to be. Don't ever let anyone bring you down or stop you. It is up to you to let your life shine and to go after your dreams. No matter what your condition is, believe in yourself and love yourself.
Why is it important to promote that message on social media?
Many people look at social media and see everyone else's life as perfect. They compare themselves to this and think their lives are not good. They need to understand that social media is a filter. I see sharing my struggles as an important part of my role, to show people that we all go through challenges and that life is never perfect.
What's next for you and your health?
I'm changing my epilepsy medicines now, with the help of my doctor, to prepare for potentially getting pregnant. I hope that 2021 will be the year that I get pregnant!
