I Have Secrets Living Under My Hair

Last updated: October 2018

I had a secret. It lived at the base of my skull, hidden deep beneath a pile of curls. My secret had a friend, it lived behind my ear. I loved to pick at these secrets in times of high stress. They’ve lived on my body in various places on and off since childhood and were usually well hidden.

Oddly enough, picking at my diseased flesh brought me comfort, and then pain, and then comfort again.

I’ve lived with these secrets for most of my life.

It started as an itch

I never qualified as the poster child for a “healthy kid,” especially during the K through 12 years. I was in and out of school often for the most absurd types of viruses one could pick up. So, it came as no surprise when one day an itch at the back of my head lead to this discovery of an odd flaky patch of skin. And similarly the same would happen in the back of my ear. It was a little painful. It felt raw, but I couldn’t verbalize what raw skin felt like back then. And occasionally, it bled.

I did what most kids would do, “Mommmmm!”

At a doctor’s appointment, it was brought up. By then, I had some odd flaking around my eyelashes, brows, and some flaking around the hairline. My doctor brushed it off as dry skin and cradle cap and said to use baby shampoo and oil because they were mild.

This wasn’t the only time my doctor brushed off a bigger health issue

You should really change shampoos

I was in a health class of all places when the effortlessly cool Goth chic who sat in the seat next to mine stood up and saw this flakey mess all over my shoulders. She was taller than me, so she had a great view from above.

“You should really change shampoos or something. Whatever you’re using isn’t working right.”

She said this as she and I were exiting the classroom. It didn’t feel malicious; it felt like a sincere comment. I think I looked like a deer in headlights.

“New product?” she asked.

“Yes!” I immediately yelped.

Things like this stick with you like an annoying piece of gum you find on the bottom of your favorite shoe.

I had switched hair products trying to defrizz my curls better and tried to reason it away. However, for the rest of the day, I kept finding myself going back to the secret spots. Pick, pick, pick. My coping mechanism unbeknownst to me was tearing open diseased flesh.

What I know now

I had skin anomalies that would keep me out of school. One, in particular, was diagnosed as a recurring virus that should only occur once in a lifetime. I got it three times throughout my teen years. You need rest, to reduce stress, and sunlight to help it heal.

Does this remind any of you of a permanent condition that isn’t a virus? No one ever sent me to a dermatologist. Not once. I will never understand that.

Over the years there were multiple signs and verifiable presence of psoriasis. I also had signs of Crohn’s disease. Both diseases were completely missed by all past doctors. My Crohn’s diagnosis came in 2005; I was 23. Psoriasis was confirmed in 2012, at age 30, during the peak of the flare (both diseases) that I am in now.

I didn’t have “bad doctors.” They were some of the top doctors in South Florida during a decade when Internet rating systems didn’t exist and dial-up was barely in every household. Unfortunately, both diseases and their additional manifestations activated debilitating arthritis that came on quick and strong in 2012.

If you see something, say something

If we had the tools that exist today, back when I was figuring out that “this is more than just a stomach ache” and “my skin should not look or feel like this,” I have no doubt I would have received a proper diagnosis sooner. There’s very little doubt left in my mind that my health wouldn’t be in the state it is today.

However, should have, would have, and could have won’t change things. I am grateful for the biologics that exist today because they’ve helped clear some of my secrets and their cousins that have appeared over the past six years. My Crohn’s symptoms have vastly improved, as well.

I’ve written this partly to exorcize the nagging itching demon lurking beneath my skin. And secondly, I've written this with the hope of reaching someone(s) to help motivate them to find a doctor they are comfortable with who will help.

My illnesses and experiences with the wrong doctors have left me as a walking talking cautionary tale. Please, if you see something, say something to your doctor.

I am 66 days out from our wedding, as I write this piece. And wouldn’t you know it, one of my secrets came back to tag along for the ride. Once again, I have a secret. It lives at the base of my skull and is hidden beneath a pile of curls.

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