The Weight of My Epilepsy on My Parents
As an adult, have you ever asked a loved one what it feels like for them to see you living with the daily struggles of epilepsy?
My epilepsy diagnosis came after a string of seizures following a marathon. I was 25 years old and living in Eugene, Oregon, 1,600 miles away from my Minnesota home.
I tried hard to shield the seizures from my family – especially my mom – because I knew she worried constantly. But in 2011, my friend and coworker Kate took the bold step of emailing her about my worsening health. The details prompted my mom and dad to drop everything at work and make a surprise visit to attend an appointment with my doctor.
Incredibly stressful for my parents
We didn't even make it to his office before the warning signs appeared. I was not the same daughter they had visited during their last trip to Eugene.
"You had no idea where his office was, even though you'd been there before," my dad told me. "Mom and I followed you around until we finally stopped to ask for directions. That was very tough on us to see you like that."
I was too wrapped up in my disappointment about forgetting something that I didn't consider how stressful it must have been for my parents. In fact, I didn't truly understand their stress levels until a full decade later when I started writing a memoir. Kate shared the email chain she had with my mom. This is an excerpt from their email:
"I'm not sure if you noticed a change in Stacia's health or memory when seeing her, but even though I've only known Stacia for less than 2 years, I've noticed her health dramatically downgrade in the past year... I am concerned for her health and well-being. And I just want her to get the medical attention she needs, and I believe she needs to be held accountable by people that love and care for her."
My parents wanted me to be open about my epilepsy
After visiting with my doctor, my parents sat me down at a restaurant table and told me that hiding the truth only made them more worried because they knew me well enough to sense something was wrong. I promised that I would tell them about any new seizures and share medical updates.
Reading the email made me curious to know if other people with epilepsy don't quite realize the stress that caregivers and loved ones carry, so I asked my mom some questions.
"What was your biggest concern with my epilepsy being I was halfway across the country?" I asked her.
"Your safety was number one but everything else was right behind it," my mom told me. "You were living alone. It's scary and it's a constant worry. As a parent, it's difficult to live with that 24/7."
The many worries of an epilepsy caregiver
I learned that it wasn't just the stress of my safety, but her knowing I wasn't able to reach my life goals.
"Not being able to help," she said. "Some things were due to distance, but other things were beyond our control, like how epilepsy affected your career and your love of running. There was sadness in your inability to live the life of your dreams. You tried your best but epilepsy constantly got in your way," she told me.
That's the main reason I didn't like to talk about my seizures. I didn't want people to worry or feel sad for me because those were reminders that epilepsy was in control. I just wanted to push the seizures from my thoughts. But now I realize that being open and honest with my family would have at least taken away their fear of the unknown, so they could have focused on better treatment for me earlier on.
Have you taken our In America Survey yet?