Personal Narrative: Postural Orthostatic Tachycardia

Almost four years ago, getting out of bed started becoming close to impossible. I slowly stopped caring. Headaches haunted my days, following me around like a shadow, never disappearing. I didn’t want to do anything, I couldn’t breathe, I couldn’t bring myself to try anymore. A pain I cannot describe encased my heart, so tightly that I became numb to it.
Almost four years ago, I was alone. Almost four years ago, I had to make a change. Almost four years ago, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). My personal experience was quite a complicated one. So many things happened that it’s hard for me to summarize everything in just a few paragraphs.
The Dysautonomia Information Network defines POTS as “excessive heart

rate increments upon upright posture.” The symptoms vary depending on the person, but Dysautonomia International describes POTS patients as commonly experiencing “fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath.” There is no known cure for POTS.
During the second semester of my sophomore year of high school, I was forced to turn to unconventional educational methods. My counselor and teachers were completely uncooperative. I had to beg to get my assignments and the teachers refused to work with me to develop a plan that allowed me to do the necessary work from home. I had to get in contact with the Home and Hospital teachers and work out a schedule for homeschooling. The teachers didn’t help though and the system was full of flaws. If I wasn’t good at teaching the courses to myself, I absolutely would’ve failed.
My high school was very professional, and everyone there was preparing to attend Ivy League universities to become doctors or lawyers or scientists. Even though I was never genuinely happy with it, I told my teachers and peers that I wanted to become a cardiologist. It sounded smart and I was seeing enough doctors at the time that I was learning more than I ever did in school.
After a rough few months, I was put on new medication and I was able to go back to attending high school for my junior year.

At the time, to me, going back was even harder than dealing with POTS. I had never been “popular”, but this year, I was invisible. During my time out of school, I lost every friend I had. I was told it was because no one knew what to do or how to handle my new situation. People treated me like I was worthless, like I could never succeed. Some had even completely forgotten that I existed. So I kept my head down and took the classes I needed to become a cardiologist. I realized that I wasn’t living, I was merely existing. At that point, I was okay with it.
Then it happened again; I started feeling as empty as a shell. I was continually feeling the worst pain I’ve ever felt, yet at the same time, I felt nothing. The medicine stopped working, and I went back to homeschooling for the second time. This time was

different.
I grew tired of feeling helpless, tired of going through the days like a robot. I needed to make a change. The solitary days I spent in my house allowed me to truly reflect and think about my life and what I really wanted. I didn’t want to be a doctor; I’d spent enough time in doctor’s offices for a lifetime. I had always been in love with the idea of making films, or something of that nature, but because of the people I had surrounded myself with previously, it had always been a joke, never achievable. But then I asked myself, “Why couldn’t I?”, and I could never come up with a good enough answer to not try it. Something in my brain clicked that day, waking me up from the trance that had imprisoned me for so long. I couldn’t let my disability rule my life anymore.
My senior year of high school was the best year of my life so far. I stopped caring about what other people thought of me. This life is mine, and if I want to do something with it, I can’t let pointless things like poisonous people and a little disability stop me. I signed up for courses I wanted to take, surrounded myself with people that liked me for me and accepted my goals and passions. I discovered how to manage my symptoms without medication holding me back even further. I found my life again, I became as close to happy as I had been in a while.
I don’t hate having this condition. Instead, I’ve learned to love it because without it, I wouldn’t be pursuing what I really love and I am able to share my story and help other people manage their chronic pains.
When I was sixteen, I found a girl named Abby. She was twelve years old and had just discovered that she had POTS. We met while I was volunteering at the pain clinic at a hospital in DC. She wouldn’t talk to me at first because, like me, she felt that no one knew what she was experiencing. She felt alone in a battle that she couldn’t win and she was tired of other people trying to “fix” her.
I would speak with her parents instead. I told them how I felt during that time of my life and how I was dealing with it now. I explained to them how I felt like an experiment, how everyone accused me of faking it to get attention, how hopeless I felt. I told them that it might take a few weeks or even a few years but, eventually, Abby will find it in herself to try again. It’s a decision she has to make herself though, they can’t pressure or force her to go back to the “old Abby”.
A few weeks later, Abby came to me. She sat with me and we drew pictures together. We didn’t speak. This continued for a while.
One day, she came in crying. I didn’t ask her what was wrong, I only sat with her and we drew. This was the day she finally spoke to me. Her blue eyes were brimming with tears and she asked me, “does it get easier?”. I smiled understandingly and sighed to her. I asked her if she wanted it to get better, when she replied that she did, I told her it will be soon. That was all that was said.
Every day after that, she would come in and we would talk while we drew pictures of whatever was on our minds. I would give her advice, but reminded her that she has to want to heal, to change, in order to get better. I could see it in her every session after that, a light growing stronger and stronger. She started going back to school, she went back to swim team, and she even started helping me talk with other kids that visited the clinic.
One day, after a few months, she didn’t come in.
I was on the metro home when I got a text, it was a picture. Abby was smiling so much that tears of pure happiness filled her once dull eyes. In one hand, she held up a picture she drew of her and I together, in the other hand, she held a first place ribbon from the swim meet she competed in that morning. It was her first meet since being diagnosed. I’ll never forget the four simple words that brought me instantly to tears; “thank you for everything”.
She never came back to the clinic.
We reach out to each other every now and then, but not often. I’ll never forget her though; I should be the one thanking her for the impact she had on my life. She was the first person I’d ever felt that I truly helped and, because of her, she hopefully won’t be the last. Abby is such an inspiration to me. She went through so much at such an early age and still found a way to be happy again. She is my hero, and every time I feel down, or I want to succumb to the symptoms, I’ll think of her, and I’ll get up and try again.
We now fight everyday to achieve our own happiness and to share our experiences with others to show them that they can too. We had to grow up too quickly, but maybe that’s a good thing in the long run. Consequentially, we found a new appreciation for what it means to live. Something that can never be taught in a classroom.
While Abby and I were out of school, we both faced many challenges that the school system wasn’t prepared for. For example, teachers didn’t know what to do, they didn’t know how to handle or help a student that wasn’t able to be in the actual classrooms. Emails went unanswered, they would never set aside assignments for us, and due to this, we had to struggle through a few months were we legitimately thought we would fail. No help was offered.
I believe teachers need to go through special training programs or at least know where resources are available for students who develop disabilities during the school year. I had to go hunting to find a way to not fail out of school. I was convinced I’d have to repeat a year or at least take some sort of summer school, which was too expensive for my family to provide so that couldn’t be an option.
Finally, I came across something called the Home and Hospital program, which I recommended to Abby when she was going through the same issues with her teachers. To be eligible for this program, “students [must be] unable to participate in their regular educational program because of overriding physical or emotional conditions.” When I told my counselor about this program, he had no idea what it was. Teachers and staff should know what options a student should have so they can aid with the situation instead of being useless.
During my toughest months, immense stress was added. I had to teach the school what Home and Hospital was in addition to desperately trying to maintain decent grades, with no help from anyone.
In addition to having to constantly be monitoring the teachers at my high school to make sure they give me all the right work, “the Home and Hospital Teaching Program is provided by part-time non-contractual teachers who instruct students on an individual basis in a home school, home, hospital, or community setting.

Teachers act as the liaison among students, parents, and home school in an effort to help students remain current with their regular classes.” It sounds great in theory, but in actuality, the Home and Hospital teachers were just as bad as my high school teachers about the situation. I only have two “teachers” to teach me eight classes, and they weren’t even versed in some of the courses. I would have to contact my high school teachers and get work from them to give to my H&H teachers who then gave it to me to teach it to myself. The program is a good idea, but it was not carried through

properly.
Why are there no options for kids who develop disabilities during the school year? Why make it so complicated for them and their families? Why doesn’t the school board have a plan? Especially with a disability like POTS, where more and more people are getting diagnosed, someone in the school needs to know how to handle it. Abby and I had to grow up to fast, because of all the medical and educational responsibility that was forced on us, we had to miss out on so many things a “normal” kid should experience. If the school system was prepared for situations like ours, we wouldn’t have had to go through all the stresses and anxiety that only made our conditions worse.