Recently, I put out an invitation to persons living with PNES to submit writing samples (poems, write-ups, personal stories, etc). The purpose of opening up the blog like this is to give a voice to persons living with PNES on a platform that is read in the US and abroad and that will reach others who are feeling alone with this diagnosis.
Olivia quickly contacted me and sent this write-up which she and I hope will be meaningful to others living with PNES.
Olivia: I am 22 years old, with a passion to serve and bless others. I love Jesus, and have been a true Christian for 6 years! I am a certified EMT and volunteered as a firefighter for 9 months before resigning because of a heat stroke. I enjoy giving gifts, painting, crocheting, singing, and playing games. I love camping, hiking, and anything to do with the word adventure! PNES is not slowing me down from pushing through, and doing the things I love.
When I was very young, I had what you might call “typical epilepsy.’ It held me in its grip for eight years of my life, until the age of 12. Then it was over… or so I thought.
Years later in 2013, I started having short episodes of blacking out while I was waitressing, and going to EMT school. Plates kept dropping out of my hand, and I wouldn’t remember what happened. The next year, I started twitching for hours at a time, crippling my ability to drive and hold a job. Tons of testing was done, but nothing could be found. They tried to send me to a psychiatrist. This was not on my list of places to go since it felt like the only reason they said this is because they thought I was crazy or making it up. I knew this was not true. It was serious, and it was very real.
Eventually, these unexplained “seizures” turned into my worst fear.
It was a beautiful day in September and I was at the chiropractor getting some treatment done. My heart started racing, I became extremely sweaty, and I couldn’t breathe. My body became wracked with seizing, something that was terrifyingly familiar to me. However, this would go on for the next 10 hours, one after the other, as I was transported to a local hospital by ambulance, and then to a larger hospital in Dallas. After a four day stay in an epilepsy unit I was finally sent home with the diagnosis of PNES.
But my story doesn’t end there. The diagnosis caused fear, anger, grief, and pain, which has required a long process to get under control and accept. What has really surprised me though is that ever since then, I’ve experienced more episodes of seizing which have been met with emotional pain and abuse from those who don’t understand. I have done counseling, been on anxiety meds, and try my best to inform people about PNES. It is extremely difficult to live with this and to try to educate others, I understand. But explaining to others what to do, and how to help if a situation occurs, makes having this condition a bit more bearable. You are not alone, even though it can feel like it sometimes. You are not faking it, no matter what people say or think. It is real. Trying to live the most normal life possible can get complicated, but you’ll figure it out! Believe in yourself. Learn to be confident. And don’t ever give up, or give in. You are special… in a good way 🙂
Loved your letter! Made me smile! Stay Strong! I too have PNES and was feeling low and then I read your letter. Thanks for the lift!
Thank you so much for sharing your story, Olivia. My daughter has gone through so much in the last 5 years or so. We are still learning. She did have 2 concussions when she passed out before any seizures began and we are wondering how they fit in with her issues, but haven’t been able to work with a Neurologist or specialist long enough to get our questions answered yet. We hope to find providers to help with that, but so far we are learning that it is even difficult to find councilors who work with PNES treatments, not just try to find a Neurologist or other specialist who can direct and assist us with figuring out what is going on with her, though we seem to be dealing with PNES/NEAD but not diagnosed.