The search for the truth is not for the faint hearted - Vincent D'Onofrio


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I used to want to be a ballerina, dancing in the spotlight of a stage. Then I wanted to be a musician, playing music all through the night. The next dream was a mathematician, solving problems no one else could. And finally I set out to be a Soundie, recording and editing sound for films.

Then before I could even realize, everything began to change.

The ballerina – she lost her balance.
The musician – she lost her rhythm.
The mathematician – well she could no longer count.
And the Soundie – well everything became a blur.

Finding out I had an invisible illness, Neurocardiogenic Syncope, has affected every part of my life, and the hardest part? No one can even see it.

Neurocardiogenic Syncope is an invisible illnes which no one has ever heard of. I get blank looks from people who I tell. How I explain it is that I constantly feel like I have a concussion, and like I have been sitting still for too long, but it won’t kill me.

It’s a pretty fundamental description of Neurocardiogenic Syncope, but it’s really all people want to hear. They don’t want to know how the blood is slowly pooling in my legs and not enough oxygen is reaching my brain, causing by body to shut down. I am lucky in this way; I hardly ever actually faint. But I do live constantly trying to make myself see through the concussion-like brain fog.

It’s a scary thing, brain fog. It can be as harmless as forgetting what you ate for lunch half an hour ago or as dangerous as driving towards a red light and not registering that you have to stop, and anywhere in between. Sentences and numbers become too complex, thinking of one word but saying another, mixing numbers around. Some days, normal conversations can be hard to understand, other days I seem to forget how to read more then a sentence at a time.

I was sick for over four years before I was finally given the diagnosis of Neurocardiogenic Syncope. I have been through so many different tests and been told I had so many different conditions. My life has changed completely.

Four years ago I was studying to work in the film industry and playing sport every other day. Now getting through a full week of work in a retail job is an achievement and the weeks when I can’t even manage that are the ones that really bring me down.

There is no cure for Neurocardiogenic Syncope. Treatments are mostly lifestyle and supplement based. Everything is in extreme moderation: working, socializing, sleeping, and eating. But this has made me find out the things that are really worth pushing through. When you need so much support around you, you find the friends who will always be there for you, and maybe someday I’ll get the chance to repay them.

I have an invisible illness, meaning that most of the time I just seem like a shy, quiet girl when I really feel like I could pass out. Sometimes that seems like the perfect disguise but in reality it makes it so difficult for people to understand what is happening. There are good days and bad days; and it is a battle, but I don’t give up.

I have found once you can learn to accept the new limitations you have, the good days can become amazing and the bad days won’t matter so much anymore. I have felt this a few times and maybe one day I will truly get to this point. It can seem impossible, but I believe life is worth it.

Source: Jess Meek, Neurocardiogenic Syncope, The Invisible Illness That Changed My Plans, InvisibleIllnessWeek.com, July 18, 2012.

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Last Updated : Thursday, January 11, 2018