The Journey of an Invisible Illness (part one)

I remember the day it started. I was walking into a basketball game with my then-boyfriend when it felt like a stack of books was dropped on my chest. It was so sudden, not unlike the feeling of being knocked flat on your back and having the wind torn out of you. I could breathe but it was painful. There were no apparent triggers, but that’s when the anxiety started. So did the doctor appointments. First to Instacare because mom thinks it’s pneumonia.

Pneumonia = ruled out.

Then to an ECG because most chest pain is caused by heart problems. Normal.

X-Ray? Nothing.

Maybe a hairline fracture on the sternum. Physical therapy where the pain gets more intense.

Anti-inflammatory drugs. NSAIDs, they call them. Naproxen. Steroids.

CT scan? The results are “minimal linear increased density adjacent to the heart left side. Possible mild atelectatic change or scarring versus other etiology,” whatever that means. The doctor tells me that means no abnormality (though I am skeptical).

Visit to a heart doctor. Lab tests.

Referred to a specialist whose title is a long word I can’t pronounce. He conducts – another long word - that means they stick a scope up your nose until it goes down in your throat and makes you feel entirely disgusting and makes your esophagus tickle. Acid reflux found.

Prilosec? = exacerbated symptoms yet again.

Lung tests and inhalers.

Trying to ignore the pain.

Therapy.

Anxiety because chest pain is for old people, not 17-year-olds who think they’re in love.

Over time the pain changes. The stack of books pressing down on the center of my chest sharpens into a knife that pries its’ way into my sternum and eventually bursts into flames that make me feel like my lungs are about to disintegrate into ash. Other symptoms eventually come along, as if they are joining the barn-raising bonfire that doesn’t seem to concern doctors but that makes this 17-year-old fearful of what is to come.

It’s always been hard for me to describe what it feels like, and no one seems to really understand when I say that my back feels tight and my arms and legs feel tingly and my head feels like it is full of stuffing, like you would fill a handmade stuffed dinosaur with. No, the “tight” feeling in my back is not just from being hunched over reading research articles for homework and it’s not a pulled-muscle kind of pain. It’s unlike anything I’ve heard described by anyone else or on WebMD or any of the other million google searches I’ve done in an attempt to describe the sensation. And then follows the insurmountable task of describing how it spreads up my arms and legs, making the rest of my body feel tingly. And then the stabbing pains in my lower abdomen and the nausea and the joint pain. After 5 years, I hide it pretty well and most people wouldn’t know that it is a mountain I am constantly climbing. The best name I can come up with is invisible illness.