Kate Zenor was in good health. She started to faint more and more in 2020.
It took seven months for her to be diagnosed with dys autonomia.
The story was told to PollyAnna Brown.
Kate Zenor is a 25-year-old cosplayer and bookbinder from Louisiana. It has been edited to make it clearer.
I couldn't figure out what was causing me to faint. I qualified as disabled after living in New York City for 24 years.
I thought I was not consuming enough food. I decided to spend two weeks with my family in Louisiana in order to get back on track with food before I go back to NY. We realized something was going on when the faint never stopped.
My medical journey has been challenging and frightening. I looked like I was in my twenties prior to this time. Many people, including my family, a few friends, doctors, and even strangers, would look at me and say that I was fine.
Symptoms like fatigue, headaches, and muscle weakness were present, but this was not the case. One doctor laughed at me because he thought it was anxiety or something else. I was wondering if it was fixable or if it was permanent and I was hoping someone would give me an answer.
It took seven months of appointments, tests, and trying to ignore others' eye rolls before I was diagnosed with chronic-vasovagal syncope.
There is no cure for Dys autonomia. Doctors told me that the mental, emotional, and physical stress of quarantining in my childhood home at the beginning of the Pandemic from March to October of 2020 probably triggered my diagnosis.
After my diagnosis, doctors and I put together that I had exhibited a number of minor symptoms in the past, such as being unable to sweat, having chest pains, and being unable to regulate my body temperature. It wasn't until I lost weight that my dys autonomia came on.
The transition from able-bodied to disabled was difficult. I've been mourning who I used to be, figuring out who I am now, and figuring out how I fit into a world that wasn't designed for me. Suddenly, some of the options I have when it comes to what I can do have vanished, as a result of the learning curve.
I can't drive a car, keep regular plans, or get around without help. Directors told me that my acting career was over because I was a liability. I had a plan for my life that was destroyed by that. I had to find a new way to support myself.
Since my diagnosis, I have worked hard to maintain a sense of independence and have found new things to do. TikTok has been my sanctuary.
I started a TikTok account for cosplay because I felt like I was bouncing off the walls and needed something to do. I needed an escape, a creative outlet, and a way to connect with other people when I was in the best environment.
Around the time my health began to decline, I began to learn bookbinding from videos on the internet. I used things like Amazon boxes, fabric, and big books as presses to make journals because I wanted to do something artistic.
I opened my shop six months after opening it. I thought I would be able to sell a few of my journals.
I linked my bank account to set up my store. I did fun photo shoots with the books and gathered the information I needed to sell them. The price, dimensions, and materials were listed for each post. After I created my initial listings, I uploaded videos to TikTok and got a few orders.
I didn't know what I was doing when I opened my shop a year ago. I knew how to run the business. I've gotten better in all aspects of the business.
It hasn't been easy. I took a break from bookbinding last fall because of my health issues. Some orders have been more difficult than others. There was a commission for a giant, aged tome. It took me a long time to get it right. I'm proudest of this commission.
Since I'm not as mobile as I used to be, I've had to learn how to keep everything in one place. I do both my bookbinding and my cosplay videos in my room.
Sometimes I hide a stool so it looks like I'm standing in a video. I'm sitting for most of my cosplays. I set up everything in advance on a small table near me so I don't have to get up and I don't have to go to the bathroom. I sit down between takes to conserve energy because I usually film those standing up.
In order to create my own business as a young, gay, disabled woman in the South, I needed to regain some of my independence and build a community that supported me.
Many of my mutuals are queer and/or disabled. I don't know what I'd do without these people, they've become friends of mine outside of TikTok.
It has been difficult for me to go out for social activities since I got my diagnosis. Being able to connect with people in this way has given me a lot of strength.
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