Monday, April 11, 2016

Mental Illness Awareness Mondays: Kaitlin and PNES

If you stopped by my blog for my Change Places With Me: Harper Summer 2016 Tour, you would know that I mentioned the idea of starting a series of mental illness related blog posts on my blog. 

This is for a variety of reasons. I am hoping that this series will open up mental illness for discussion, help to reverse the stigma against mental illness, and remind everyone that you are not alone, no matter what you are going through. 

This post is one of these posts. Kaitlin from offered to share her experience with mental illness and the struggles that she faces every day, especially with the stigma against mental illness. Rather than speak for her, I'll let you read her post now. 

I have PNES (Psychogenic Non-Epileptic Seizures). I was diagnosed with epilepsy in February 2014 after months of having several seizures per day. I did not know I was having seizures, because I only knew about grand mal seizures (the kind where you fall and shake.) My seizures are much different. I behave oddly. I do repetitive movements (like pulling on my shirt over and over), repeat words or phrases, stare blankly, have difficulty speaking, and talk differently with a high pitched childish voice. 

I was very relieved to get a diagnosis of epilepsy, and finally know what was happening to me. This was happening multiple times per day! I was put on two separate anti-epilepsy medicines and was still having seizures daily, or at least every other day. Eventually, I went to the epilepsy monitoring unit and was connected to an EEG and had 24 hour video monitoring for 5 days. They did record my seizures via the video, but nothing showed up on the EEG. They told me this meant that I was having pseudo seizures. I asked if that meant they thought I was faking it, because I absolutely am not. They told me no, they are real seizures, they just don't have anything to do with epilepsy, since the seizures are not caused by electrical activity in my brain. 

They told me the pseudo seizures are caused by mental trauma. The seizures are real, the same way people who have schizophrenia hear voices that aren't there. They aren't making it up, but it is happening in their mind. "But I don't want to be insane." I whispered to the doctor with tears streaming down my face. She explained that having PNES is not insanity and there is nothing wrong with having mental illness, it is the same as any other illness, there is just not a physical cause.

thisisnotmyfairytaleendingg gif

I thought having seizures was scary, but for some reason being diagnosed with PNES is scarier, and more upsetting to me. Even though it is estimated that 30% of people diagnosed with epilepsy actually have PNES, I had never heard of anyone having this before. Because of the shame and stigma associated with psychiatric illness, I don't tell people I have PNES, I still tell people that I have epilepsy. That way if I do have a seizure when I am with someone they will know what to expect. I don't want people to judge me or call me crazy. I have major anxiety that people are going to stop talking to me if they find out that I have a mental illness, rather than epilepsy. 

 Before I was diagnosed with epilepsy and we were trying to figure out what was happening, I had one friend tell me I am doing this to myself, and that it is my fault that I am sick. She said if I tried harder, and exercised and ate healthier, that I probably wouldn’t have any problems at all. I felt vindicated to know that she was wrong and I had epilepsy. Now that I know I have PNES, I can't help thinking about the things she said, and worry that other people will feel like that. Because of the stigma associated with mental illness, I don't feel comfortable sharing my problems with anyone other than my husband.

Because of self-stigma I avoid many social interactions. I can't do a lot of things that other people can do anymore, like drive, or go on amusement rides, and I worry that this will affect my friendships because now people have to make more of an effort to be around me, and I feel like if they knew I had mental illness instead of epilepsy, they wouldn't make the effort anymore.

Telling people I have PNES is hard. I feel like I have this huge bomb to drop on people's laps. I automatically feel defensive and upset, thinking someone might have a negative reaction or judge me. I know that if more people talk about having mental illnesses the stigma will eventually go away, but I am just not brave enough to tell the people in my life yet. I hope this article helps.


Thank you so much to Kaitlin from for contributing to my blog with this amazing post. I also have to give her an extra thank you because she was the very first person that volunteered to write a blog post for my mental illness awareness series. Thank you so much, Kaitlin!

Feel free to post in the comments your thoughts about this post, along with words of support and encouragement. This "series" of blog posts is meant to be a discussion as well so please feel free to use the comments!

As always, be sure to check out Kaitlin on, or @vivacioushobo on Twitter!


No comments:

Post a Comment

Thank you so much for taking the time to comment on our blog posts! I will always try and get back to each and every single one of your comments! Please feel free to leave suggestions for new books to review, as well as comments on the individual reviews themselves. Again, thank you so much for stopping by!