When I Wonder If I Could've Been Diagnosed Earlier If I Explained Myself Better

“Lightheaded.”

“Dizzy, but not the spinning kind.”

“Like I’m going to faint.”

Presyncope.

I wish I’d know that word back then. Things could have been much easier. I spent months not knowing how to describe my symptoms in a way anyone could understand. I said I was lightheaded so many times for lack of a better word that my mother would finally exclaim: “But what does that mean?!” I didn’t know how to respond — lightheaded was just this feeling I’d been feeling for weeks and then months. Like I was about to pass out but didn’t completely. Or I’d stand up from a seated position and have a couple moments of blackness, go weak in the knees, and slump back down.

Presyncope is a term for the feelings one gets preceding a brief loss of consciousness that may only last a few seconds. It’s not a very common term, one you won’t even find in most dictionaries unless it is particularly medical in nature. Presyncope itself is a symptom of syncope, otherwise known as the actual transient loss of consciousness or sudden change in posture. There are many symptoms that go along with presyncope and they are different for each person. For me, they’re like warning signs. If I’m at risk of passing out, I might get what feel like hot flashes, start sweating without explanation, my legs and hands will begin to shake, my vision may blur, and my heart rate will spike too high. But ultimately, the most overwhelming symptom is the feeling that I’m about to go under — the presyncopic feeling of lightheadedness.

It took me months to finally be diagnosed with postural orthostatic tachycardia syndrome, or POTS. I can’t help but wonder if the diagnosis could have been speedier if I could have better explained myself to my parents and doctors. After my first syncopic episode which was followed by a persistent presyncopic feeling, I went through doctors like air, seeing first my general doctor, a neurologist, a special diagnosis doctor, another neurologist, and finally a doctor that specialized in autonomic dysfunctions.

It took me 11 months to finally receive my POTS diagnosis and I’m told that makes me lucky. For some people it takes years to receive that diagnosis and other people may go their whole lives without knowing they have an autonomic dysfunction. I also realize that I am extremely blessed to live in an area that has many doctors nearby, and that I am extremely lucky to have found one of the nation’s only POTS doctors working just a few miles from where I live. None of that escapes me. But there are times I also wonder if my painstaking search for a diagnosis could have been much less prolonged and difficult if I had only known how to explain myself better.

If you’re going through what I did a few years ago, searching for a diagnosis, struggling to get people to believe in you and your invisible illness, know first and foremost that you’re not alone. Someone will believe you. It will happen. Don’t let people talk you out of believing in yourself because then you will be completely lost. And do some research on your symptoms. Try to avoid diagnosing yourself over the Internet, which can sometimes be a scary place. Instead, focus on the symptoms and search for ways to make them as specific as possible. I knew I was in the right place when I walked into the doctor’s office and read the sign in bold letters: We believe you.

For more information on syncope and presyncope, click here: here.

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