Lemonne-

From the age of 10–12, I started noticing that there was something wrong with my body. It's only gotten worse with age. When I stand up, I feel faint, lose my vision, and my extremities feel numb. I have extremely cold hands and feet, nausea issues, headaches, and a hard time exercising due to feeling unable to breathe. I have been to an unknown number of doctors. I was diagnosed with anxiety — which, to be clear, I do believe I have. But it's not related to the dizziness. I don't lose my vision when I'm stressed, I lose it when I stand up. It's been such a thing for so long that I have made a habit. When I lose my vision and feel faint, I will stand, wide-eyed, with my hands outstretched, until it goes away. I've been doing this for YEARS.

I insisted to get blood work done, since some things said they were symptoms of low iron. They came back with nothing wrong. I insisted to get tested for asthma, since I was struggling to breathe and doing a lot more physical activity at the time. They came back with nothing wrong. While on a medication that reacted poorly and increased my anxiety, I called 911 because I felt so nauseous and faint that I thought I was starving to death. They took me off the medication, and the symptoms continued. I insisted on even more blood work. This time, they said a very slight iron deficiency. "Finally!" I thought, "This must be it! Once I take supplements, my symptoms will go away!"

They did not. At this point, I think I'm just weak. I have collapsed in gym class and struggled for breath and quit sport and fallen over when I get up to use the bathroom. I'm just weaker than other people, physically AND mentally. This is all my fault. There's nothing wrong with my body, I'm just crazy.

Fast forward to the end of the year. I'm in theater class, and I stand up and lose my vision. I put my hands out and wait for it to pass, as I always do. I'm used to this. A freshman asks me if I'm okay. I tell her that this happens all the time, I'm alright. She asks me: "Do you have POTS?"

I pause. I've heard the term in passing, but I don't know what it is. It's never been brought up to me by medical professionals. Not once. Not. Even. Once.

She tells me a little bit about it, but she doesn't know much. A few months later, this summer break, my partner asks me: "Have you gotten tested for POTS?"

A few days later, I look up the condition while on a break at work. I stop, and I stare at it. All of my symptoms match up. It's more common in AFAB people. The average onset age is 14.

I go home. I take an online quiz from a reliable source. It comes back with a 100% likelihood. I read the article below, and I start crying. I'm crying writing this. For years, I've thought I'm crazy or weak or making it up as an excuse, when I can physically feel that something is wrong in my body. They take my experience, and they put it on a page — because this isn't just my experience.

POTS has a misdiagnosis rate of 70%. SEVENTY. PERCENT. It takes, on average, 4 years and many doctors to get diagnosed. It took me so many years of pain and suffering and begging to know what the hell is wrong with me, and guess how long it took a random high-schooler?

One conversation.

One look at me, losing my vision when I stand up, and she got it right.

So, genuinely — tell me. Tell me what I did wrong. Tell me why the fuck doctors have failed me and millions of other people. Tell me why they can't see the blatantly obvious. I'm emotional right now, but I need answers. Why can random people diagnose better at a glance than some medical professionals after years? this has happened to so many people with so many conditions. I haven’t been diagnosed by a professional, but the amount of catharsis I have gotten from finally being understood should speak for itself.