To the doctor who finally believed me,
As a young female at the tender age of 15, I had the world ahead of me with no idea that life could be full of struggle. I was a freshman in high school, in the best shape of my life, doing the best I ever had in school – when in a split second my world began to shatter. It was November, and I was on the phone with a friend while laying in bed when I realized I had to use the bathroom. When I stood, the room went black like I was stuck in a tunnel and had no way out. I woke up on the flood of my bedroom with my parents surrounding me. This wasn’t the last time I would ever faint.
My parents didn’t think anything of it. They got me back in bed and set me up with some water thinking the cause of this episode was simple dehydration. However, when two days pass and I still couldn’t sit up without being dizzy we went to my doctor. While there I had my first electrocardiogram, which showed an abnormally fast heart rate and I was referred to a cardiologist. By the time I saw this doctor I had fainted over 30 times and had been to the emergency room many times with no answers. Without running a single test, this doctor dismissed me. My parents were told I wanted attention and if they just didn’t pay attention to me when I fainted, I would stop.
I wish that was the case, but the fainting continued. We saw a second doctor who at least agreed I needed some testing done. However, when all the tests came back “normal” aside from tachycardia (that fast heart rate) they too thought I was making it up. They suggested I needed therapy. Honestly, if I was them I would have thought I maybe I was making it up too. Who hopes for something to be wrong? The doctor would come into the room and say another test was normal, that was another thing ruled out, and I would lose it. Of course I didn’t want to be sick, but I wanted validation because even I began doubting myself.
I spiraled into this depression at age 15 because I couldn’t stand without fainting. Was I making it all up? Was there really anything wrong with me? I felt guilty for making my parents take me to doctor after doctor who all told us the same thing; there was nothing wrong!
Finally, in February, my parents pulled out their big guns and took me to a big hospital out of state and promised me that even if nobody else believed me, they did. They promised me they would keep searching until someone listened – and eventually someone did. I remember I hated doctors at this point. I thought nobody could ever help me. I thought I would be living the rest of my life constantly fainting when my body changed positions. Until my new cardiologist mentioned postural orthostatic tachycardia syndrome (POTS).
He explained to us what POTS is and that I wasn’t making any of my symptoms up. He did a poor man’s tilt table test on me in office, which consisted of taking my blood pressure and heart rate while laying, sitting, and standing and watching what happened. Then I was sent to a lab to have an actual tilt table test which was just a fancy version of the test done in office.
Just 20 minutes and two tests later spent with a doctor willing to listen, and I was diagnosed with postural orthostatic tachycadia syndrome. It is a form of dysautonomia which is a dysfunction of your autonomic nervous system. Basically the system that controls everything you don’t have to think about. When I stand from a seated or prone position, I have a lack of blood getting to my brain because of poor blood volume and my bodies inability to properly constrict blood vessels. This causes me to faint. Everybody has this feeling sometimes when they stand too fast or are standing for a long time when they are hot. The problem is, my body feels this way all the time. Medication, proper hydration, salt therapy, and light exercise has helped tremendously. Sometimes I can go months without fainting, which is a miracle from where I started.
Since my POTS diagnosis I’ve received many other chronic illness diagnosis which have altered my life even more so than what my POTS did, but I’ll never stop fighting. My doctor has told me that I had many things going against me, which made it hard to get my diagnosis.
1. I am a female. Females are less likely to be taken serious from medical professionals due to what in the past was “hysteria.”
2. I am young. People think I can’t possibly feel as bad as I claim I do because at the time I was only a teenager, and well, teenagers just don’t get sick right?
3. My illnesses are all invisible. If someone isn’t trained to see what is going on with me, they simply can’t. People like to believe what they see, and it’s hard to believe what can’t be seen. My doctor called this the “trifecta.” Because of this, young woman have the hardest time finding answers.
So thank you doctor number five. I never thought I would have a life because I couldn’t even stand. You believed everything I said and you gave me my life back. You helped me get back into sports and school and “normal” teenage things. You were there through every high and low and I can’t thank you enough. We need more doctors in the world who listen and believe. We need more who are willing to try multiple treatments until one begins working. We need more doctors like you.
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