I was diagnosed with epilepsy when I was 9 years old, right after I had my first seizure, at a friend’s house. My hand started to close on its own and, soon after, I fainted. I woke up in the hospital and my doctor explained that I had epilepsy (also know as dysrhythmia). The condition happens as a result of a vein in my brain that stops working for a second, leading to a seizure.
When I was a kid, my mom was worried I would face bullying or stigma, so I only told my close family about the seizures I had. I continued to quietly live with my condition as I got older.
That is, until I revealed my secret life with epilepsy this past February, when I was 31. To my surprise, finally opening up about life with epilepsy as an adult has been one of the best decisions I’ve made.
It wasn’t until I started planning for pregnancy that I decided to share my diagnosis publicly.
I was thinking about getting pregnant but was torn over whether I should do it while on the epilepsy medication that prevents me from having seizures, or whether I should stop taking medication completely. I’ve had a complicated relationship with my epilepsy medication throughout my life. I feel much better about taking it now that I’m an adult, but I didn’t always feel that way.
During my teenage years, my diagnosis made me feel different, and I just wanted to fit in.
For example, I wasn’t able to party or drink with my friends, as alcohol can interfere with the effects of my medication. People would ask questions like, “Are you scared of drinking? or, “Is there something wrong with you?”
I was insecure about it, and once you’re self-conscious about something, any little off-hand comment about it can affect you. It was also around the time I had moved from Brazil to Scranton, Pennsylvania, so I already felt very different from my friends, trying to adjust to a new country and language—almost a new world, in a sense.
I would go home and lie in bed and think, Why me? I ended up in a very dark place, and eventually I stopped taking my medicine without telling my mom or my doctors. I ended up having a seizure in school in front of my friends. I remember waking up in the hospital, scared and crying like a baby. I couldn’t even look at my mom. I felt so ashamed. I knew that I had risked my life. What if I had experienced a seizure while I was driving or going down a flight of stairs?
Now that I’m older, I realize how lucky I am that my medication has kept my epilepsy under control. In fact, the last time I had a seizure was eight years ago, when I tried to go off of my medication (under the guidance of my doctor) to see if I still needed it, and I did.
I also haven’t stopped medication since then because my lifestyle doesn’t allow for it. I put a lot of hours into working on my fashion brand and beauty line, Elaluz, and things can get stressful. Stress is a major trigger for my condition, so it’s best I stay on medicine.
But I’ve always dreamt about being a mom and having kids. I’ve known since I was young that I would have to plan it and work with doctors, because anti-seizure medicine can add risks to pregnancy, like potentially causing birth defects.
While trying to make a decision, I decided that sharing my situation might help me connect with people who have gone through something similar.
Talking candidly about my fears of getting pregnant while on medication ended up being the best thing I could’ve done.
The type of feedback I got was priceless. So many women reached out to me with their own stories about having epilepsy and getting pregnant and having healthy children. Those stories gave me hope and comforted my heart. There were also people who reached out to me telling me that I had inspired them to share their own stories, and this made opening up (though it took me a while) so worth it.
Right now, I am still trying to plan for pregnancy. For the past year, I’ve been testing different medications that my doctors tell me are better for pregnancy, and I think we are 90 percent there in terms of finding the right fit.
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I decided it’s best to stay on medicine because, if I don’t, I’ll be stressed and worried about having a seizure, and all that stressing won’t be good for the baby. So I’m putting it in God’s hands and the doctors’ hands, praying that everything will be fine—and that when it’s time I’m going to get pregnant and have my healthy baby. That’s the phase I’m living in now.
Though some would say that being diagnosed with epilepsy is unlucky, I don’t think it is. Everything that I’ve gone through with this condition has taught me so much in my life, and it has made me appreciate my health and look at life in a different way. I look at my journey as something positive today. I see my diagnosis as something I can share with others to inspire them to share their own stories too.
—As told to Jasmine Gomez
Camila Coelho is the creator of camilacoelho.com, a fashion, beauty, lifestyle, and travel blog, and founder of Elaluz and the Camila Coelho Collection. She’s also an ambassador and board member for the Epilepsy Foundation of America.
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