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Medical PTSD From Childhood Chronic Illnesses

My first memory is of needles.

I was maybe five years old, sitting on a gurney in an ER. I was very sick, although I’m not sure with what, and a nurse was were trying to get an IV in me, something made difficult by the bad combination of dehydration, already bad veins and being a wiggly kid. Sit still,” the nurse told me, with a tight grip on my arm. “Or I’ll make your mother go to the waiting room.”

Thirty years later, I know that was an empty threat. Even if the woman did have the power to kick my mother out, which I doubt she did, I know my mother wouldn’t have budged an inch. But in my mind, this nurse was all powerful and I didn’t want to be alone, so I sat still with tears running down my face as the woman attempted to slide a needle into my ever disappearing veins. I don’t know whether she got it or not; that’s where the memory ends.

How PTSD Has Affected Me

Several years later, I saw that nurse’s face again, this time on Facebook. Because I was friends with a few nurses from one of the three hospitals I spent so much of my childhood in, this woman was a “friend suggestion.” My blood pressure, which is always abnormally low, went sky high. I started blinking rapidly. Then I removed the suggestion. Five minutes later I decided to go a step further, and I blocked her.

I’m not saying what I did was rational or even right, but that one memory has stuck with me. According to the National Child Traumatic Stress Network, I’m not alone — anywhere from 12 percent to 52 percent of people who had a long term, chronic illness as children have posttraumatic stress disorder (PTSD) or other lingering emotional side effects from what they went through.

Long Lasting Effects

I have other triggers, some minor, some not so minor. About nine years ago I was in a CT scanner after a surgery that ended with immense complications, and I passed out and woke up on a ventilator several days later. For the longest time I had panic attacks to the point that I refused to get into a CT scanner unless I was sedated. Although it’s gotten better with time, the machines still make me nervous. Unfortunately, thanks to my condition, I’m in and out of CT and MRI machines frequently.

When I was six years old, I was on a long-term antibiotic to prevent the renal infections that I so frequently got (and still do, sadly). One night the liquid medication was poured, but then I got distracted and forgot to take it. When I finally did, it had gelled over and it was so nasty I gagged when it went down. Shortly after that, I went to see my grandparents, where I asked for a glass of water, which I proceeded to attempt to drink — and ended up vomiting everywhere, along with the medication that hadn’t absorbed in my stomach. I never took that medication in liquid form again. Even now, 24 years later, if I were to see the bottle I would most likely gag. The medication was yellow, and I hated the color from then on out. It took me years to wear a yellow piece of clothing. Even now, I rarely have anything to do with the color and I have a visceral reaction against it.

Five years ago, I moved from Missouri, where I spent most of my life, to Texas, where my husband had gotten a job. Three or four months after I moved, I realized how much better my medical trauma-related issues had gotten. The reason? I was no longer near all the places where bad medical things happened. I mentioned that to a close friend, who told me she wasn’t aware of the extent of my “problems” with medical trauma induced anxiety, because I had hid them so well.

Of course I had. I was ashamed. For years upon years I told myself that PTSD means you’re weak. It means you can’t take what’s coming to you. It means you’re not strong enough to deal with life. But now I know that’s not true.

In reality, PTSD is a very real and common mental health problem. And while it’s typically a designation reserved for people who have witnessed a life-threatening event like war, a car accident, natural disasters or sexual assault, researchers are beginning to study how medical traumas can produce similar symptoms.

I’ve learned that being triggered by my childhood medical experiences doesn’t make me weak. But I’ve also learned that medical PTSD doesn’t have to control me. I can take what comes my way. I can live my life on my own terms. I’m OK and I’m going to stay OK. I can be scared. I can be emotional. I’m human.

Emily Hendricks is a Missouri native currently living in Texas. Born in 1986 with a rare condition called VACTERL, she has endured hundreds of hospitalizations, surgeries and other procedures. She and her husband (who also has VACTERL) were married in August 2011, and they make their home in Austin. Follow her on Twitter: @emhjensen and Facebook.

Article originally published September 6, 2016 on Chronicality.com. It has been updated.



Stories of a mid-30s woman who loves books, movies, yarn and bright red lipstick.

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Emily Hendricks Jensen

I am a wife, an aunt, a former journalist who now deals in hospice bereavement. I write about my chronic illness and my grad school experience.