I’ve been wanting to write an eloquent post about this but I haven’t been able to so I’m scribbling down my thoughts:
When I was diagnosed with epilepsy I felt at peace. Even though the future was unknown I felt secure having a well researched condition with many treatment options. Shortly after my diagnosis I started this blog as a way for others with epilepsy to feel like they have a friend. I also wanted to educate the public about the lesser known realities of living with the condition.
It was all going so well...
In the beginning of August I had a VEEG done. I stayed in the hospital for three nights with wires hooked up all over my head in an attempt to find out where in the brain my seizures were coming from. During my stay I had two of my typical episodes where I am frozen and unable to speak or move. I was relieved to have events while hooked up because I had been nervous that I might not have an episode for the doctors to read.
After looking over my EEG my neurologist informed me that there was no electrical activity in my brain during my episodes and that therefore, I do not have epilepsy.
I repeat: I do NOT have epilepsy.
What do I have? I’m not completely sure. My neurologist thinks I most likely have psychogenic seizures, a bizarre type of migraine, or a combination of the two. When my neurologist said my seizures were psychogenic I thought she was telling me I am insane and it was all in my head. Luckily, this is not the case. Psychogenic seizures are a real thing happening in the body beyond the patient’s control, just not from electricity in the brain. It turns out one in three people who have a Video EEG done are diagnosed with psychogenic seizures. Many of these patients have carried around a diagnosis of epilepsy for many years if not decades. I am grateful that I had the VEEG done early on in my epilepsy journey. It’s scary to think of how many people are living with a misdiagnosis and being treated for the wrong condition.
After being told that I do not have epilepsy I felt embarrassed and ashamed. I was now a person without epilepsy running an epilepsy awareness blog, I felt like a fraud. I wanted to take down my blog and Instagram and hide from the world forever. Thankfully, several of my online epilepsy friends encouraged me not to.
I am grateful for the experience of being diagnosed with epilepsy even though it turned out to be incorrect. I have learned a lot about a condition that I previously knew very little about. This has shaped a new perspective for me: I want to learn about others not because we have the same condition but because people are worth getting to know and learning from.
After having a couple of months to reflect I have decided to continue seizyfreezybeautiful as a chronic illness page. It seems counterproductive for me to stop blogging about my health journey when it’s just getting started. I don’t want to let go of an outlet that has been so cathartic and therapeutic for me. Who knows, maybe there is someone else out there going through something similar. Even if there’s not, my story is worth telling. My diagnosis may have changed but my desire to educate and help others has not.
I have been quiet about my undiagnosis because I am not exactly sure how I feel or what to say about it. I have been worried about what people might say or think about me. But, if someone views me differently because of this that is silly so I am choosing to be transparent. Since my VEEG two months ago I’ve gone to a couple of doctors and I don’t feel like I’ve made progress towards getting answers. But, I will keep persevering towards better health, and telling the internet all about it ;)