Megan Reynolds
As a child, Megan Reynolds would find herself staring at nothing in particular, thinking she’d just gotten lost in her thoughts. But she never imagined that these periods were anything serious, much less the beginnings of a condition she’d deal with for the rest of her life. Before she was correctly diagnosed, she received several misdiagnoses by doctors which led to a delay in her condition being properly identified.
“I was twelve and a half when we went to the hospital and I was eventually diagnosed with absence epilepsy and, a few months later, complex partial epilepsy,” she said. “But every doctor my parents took me to as a little girl misdiagnosed me until it was correctly identified.”
Over the next couple of years, Megan felt like she was trapped in her diagnosis and, subsequently, trapped in hospitals. While she did receive exemplary care from her doctors, she began keeping to herself more and more in order to keep other people from seeing that something was wrong. In some ways, this even included self-isolating from her family.
“My family and friends were supportive, but it was still a very tough time. They still had their normal lives while I felt like I was trapped in the middle,” she said. “Honestly, I felt jealous and resentful because I wanted what they had. But in the last few years, I’ver ealized that there’s no use in that.”
Megan’s grandmother is an important figure in her life – and is someone who lives with fibromyalgia. This has proven to be a surprising point of connection for the two.
“She can understand what I’m going through because she knows this pain,” Megan said. “She doesn’t know epilepsy specifically, but we can still connect in unique ways because of the ways we’ve suffered.”
In her day to day life, Megan’s found that epilepsy slows her down in many ways. Contending with this continues to weigh on her mental health.
“Sometimes, I’ve wanted to give up. I can’t grasp things as easily as others can because I can be very slow at doing new things,” she said. “It can feel like nobody understands me, too. My family and friends don’t have seizure disorders and it can be hard to explain what I’m going through. But I have found that other people with epilepsy, with seizure disorders, can sympathize with me. We understand how hard it can be.”
Today, Megan believes that there are important resources that could help people living with epilepsy, but they simply don’t exist yet. As a result, she’s working on her own book to share her personal experiences of living with epilepsy. She’s actually working on the book alongside her grandfather, who has had a significant impact on her spirituality as well.
“I feel that God called me to get to work and bring this book to life,” she said. “I hope to inspire people and help others build relationships with people who truly understand what it’s like to live with a seizure disorder.”
In addition to her writing, Megan supports the work of the Epilepsy Alliance of Louisiana by participating in their Seize theDay events. She appreciates these opportunities to meet other young women who are living with seizure disorders.
As she looks ahead to the future, the28-year-old Megan is focused on helping foster relationships with people who can truly understand the struggles of living with a chronic condition like epilepsy.
“I hope they can come up with something to cure epilepsy, but we don’t know when that might happen. So, for now, I want to help people who are living with epilepsy because it is a unique kind of pain,”she said. “All of our seizures are different, but we still know what the others are going through. And I know that we can all be so much more than we think, we can help each other still pursue our dreams.”
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