I started to get sick around age 11 or 12. I will never forget the day my life changed forever. It was a d.e.a.r day (basically some acronym meaning make the children read.) I was in my 7th-grade history class and I started to get this weird dreamlike feeling. And a light switch went off. oh no I know this feeling, I’ve gotten this feeling before I passed out at six flags last year. Now I am terrified of fainting. It is one of my biggest fears, especially when it is in front of people. You pass out and everyone stares at you and you can not remember where you are and people start screaming at you. “WHAT’S YOUR NAME? WHAT’S YOUR NAME? CAN YOU HEAR ME?” well now I can Robert after you screamed in my ear and woke me from my peaceful knockout. It’s just super embarrassing.
Of course, I was like oh hell no, I am not going down in front of everyone. Thankfully it was almost the end of d.e.a.r and I was trying to rationalize why I felt like I was going to pass out. I thought oh I must need water, I haven’t been drinking a lot! I did a lot of sports like soccer and such and knew I wasn’t drinking enough. My eyes darted towards the nearest water fountain and I felt myself rushing to water but that still didn’t help. Still, I felt really light headed and my vision was starting to darken. I went into a panic.
My first thought was to grab my nearest friend and let her know I was feeling like I was going to pass out. Which led me to ask if she could take me to the nurse. Thankfully she did and we made jokes along the way of course. I don’t remember what happened after that. But since that day, for the last 13 years, I have not stopped feeling light-headed. There is different severity’s of my light-headedness but I always feel like I am in a constant dreamlike state.
As time went on I felt more and more symptoms coming on and I could do less and less. I started struggling to breathe. My anxiety started to get more extreme. My vision started abandoning me. I was sitting in my 7th-grade math class and I remember looking at the wall. On the wall were these dots. The type of dots you see on old tv screens or the ones you get before you pass out. It turns out they were not on the wall. They were in my actual vision. As time went on those kept getting closer and closer until it’s almost like I see a screen in front of my vision of an infinite amount of dots.
I started to become terrified to walk in the hallways alone. My fear of passing out was always there haunting me. I always needed a buddy in each of my classes or I didn’t feel safe. I always would just be sitting in my class panicking, waiting for symptoms to become more extreme. Thankfully I was normally able to hide my panic by being the class clown. But nobody knew that this was going on. No one knew how terrified I was every day. No one knew how sick I was getting.
I had to get random tests done and one time I had to wear a heart monitor for 48 hours. We had to get changed in gym class and someone saw the heart monitor and I lied and said my mom would have me and my brother get our hearts checked randomly. I did eventually tell a couple of my closest friends some of my symptoms but they did not know how bad it actually was. I still didn’t know what was wrong with me.
I then moved around 13 and it was a whole new ball game. This is when life got worse. I was getting sicker and still no one could figure what was wrong with me. In my mind, I was starting to accept that I was slowly dying. I felt these intense terrifying symptoms. Weakness and exhaustion always consumed me and I had to push myself to go to school every day. My heart was beating so hard and fast all day.
I walked through the halls praying I wouldn’t pass out. I stopped being able to see my old friends a lot on the weekends. It was so I could conserve my energy for school during the weekday. And I still was hiding all of this from everyone trying to look like I was as normal as possible. I didn’t have any security and I tried to miss school as much as possible. But life didn’t think that was enough. The kids in my new school started bullying me bad. No, its fine be mean to the potentially slowly dying kid. My home life sucked. Everything and everyone just felt like it was out to get me.
So my health kept declining. I started to be able to do less, walk around less, stand less. No one, including my parents, believed me that anything was wrong because tests kept coming up fine. I had no one. I went from one doctor to the next with no answers. Many car rides back home from the doctors were spent crying in the back alone. To most people negatives when it comes to health tests is something good. When you are chronically ill, a negative means no answers, it means more doctors and more tests. It means more time not knowing whats wrong or how to treat it.
On top of that, they just blamed it on anxiety. When doctors can’t figure out what’s wrong they just say oh it’s anxiety and wash their hands clean of you. So my parents and guidance counselors started to drag me out of the house to go to school.
I made sure to only miss school when I knew I wasn’t going to make it. I would use my sick days wisely. Still, If I missed a day of school I would be punished and my mom would ignore me all day. I would hide in my room. I used to skip school and hide out somewhere so I didn’t have to deal with the fear of being tormented at home. One time I hid every day for the first week of school and didn’t go to any of my classes. Like I literally hid in the school and didn’t attend my classes.
People started to wonder why I would skip class and not show up. And I couldn’t let them know it was because I was actually terrified of passing out. Or that I feel so extremely sick and it’s hell. So I would just act like I was too cool to be in class. I would act like I had lots of other things to do and other friends to be with.
In actuality, I used to love school. Socializing was my favorite and I actually wanted to learn. Getting in trouble would scare me. But in order to protect my deep secret, I had to act like I didn’t care.
I liked playing hide and seek with my guidance counselor. She would have to try to find me to bring me to class and I would run away from her. One time I was going down the hallway minding my business trying to find a stairway to hide in. She found me and started walking calmly down the same hallway and I was like nope. And stopped mid-step and went the opposite direction. She obviously caught me and acted all like she wasn’t looking for me. Calm down lady we both know what you were doing. She, of course, dragged me to my class.
Around the end of ninth grade, I had a Tilt Table Test. It should really be called A fainting persons’ nightmare: the machine from hell but I guess they had to shorten it to tilt table test. Basically what they do is have you lay on a table and then it comes up 90 degrees. If you pass out, there is something wrong with you. If you don’t… you are in luck.
Well, Ya girl passed out. At first, I didn’t but then they put something under my tongue which I still to this day have no idea what it was. It could have just been something to make me pass out so they could steal from me. Just kidding. But within 90 seconds I apparently passed out and they diagnosed me with a type of Dysautonomia called Neurocardiogenic syncope (NCS). It just means random fainting. It was weird because I did not 100% fit that criteria. But I was just happy because finally, I had a diagnosis, I could say screw you to any adult that doubted me. Even if that is only the first of many I’ll encounter.
And this is where I pause it. You are really going to want to come back for the second part. I did not even get to the juicy stuff yet.
Leave your comments below if you have ever experienced something like this!
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