Feeling Guilty for Having Epilepsy? Me Too.

When I was 17 years old and having multiple seizures a day, waiting to be diagnosed, I remember lying in bed and my mom coming in my room and lying down next to me. She told me that everything would be okay, and we would figure out what was wrong. That was the first time I felt guilty for my health.

Because I was mainly suffering from focal impaired awareness seizures and absence seizures, they were harder to see and diagnose. I went through over two years of suffering from seizures and being misdiagnosed with bipolar disorder, schizophrenia, and substance abuse.

At one point, I was living in an inpatient mental health treatment center because of my depression and undiagnosed seizures. On my birthday, my sister picked me up and took me to see a movie that I hardly remember watching. She gifted me a Simon Fraser University hoodie and reminded me of my goals, reminded me that one day I would still get there.

Every day, my family fought for me to get the correct diagnosis and care. They sat in appointment after appointment, speaking for me when I was too sick to speak for myself. They spent hours caring for me and the more time they spent, the more of a burden I felt on their lives.

And over 10 years later, I still feel guilty for this. And that’s okay.

The feeling of guilt from living with a chronic health condition is common, and often times we feel like a burden on those in our lives.

I now live with my fiancé, and after my last seizure, I laid helpless as he picked me up off the floor and put me into bed. I reached my shaking hands out to every cup of tea he brought me and snuggled into the blankets he wrapped around me on his way to work. I felt guilty for being a burden.

So, the questions now remain – how do we thank the people in our lives? How do we put aside those feelings of guilt and burden? There’s no easy answer to this. I wish there was, but it’s a journey.

Learning self love is where I started, but it’s going to be different for everyone. Over the years, I’ve worked on learning that I am valuable and worthy of love. This is through little things like allowing myself time to rest when I need it or having a bubble bath. Self love can be played out in so many different ways!

The other thing is I make sure I say thank you to those who have helped me, like my fiancé and family. I make sure they know that I’m grateful for their helping hand.

No matter where you are on your journey with guilt, just know you’re not alone and the BC Epilepsy Society is here to help.

Christine Jamieson works for the BC Epilepsy Society as our Epilepsy Outreach & Education Worker and is a person living with epilepsy who holds the titles of Miss British Columbia 2018/2019; Miss Canada 2019; and Ms. Universe Millennial 2022. Christine believes in impacting the world for the better and is a strong advocate for epilepsy and mental health.

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