Medical PTSD

I was sitting in the hospital’s basement, waiting for the radioactive tracer the nurse had injected into my veins to make its way through my body. Then, I’d be taken to a room down the dimly lit hallway, where I would be laid out on a hard table and an enormous camera would take innumerable pictures, creating images from the radioactive glow emanating from cancerous sites where the tracer had accumulated. Two weeks and an eternity earlier, I had been diagnosed with inflammatory breast cancer — IBC. We were trying to see how far it had progressed.

As I sat there with my thoughts and my fears, trying to keep a stiff upper lip and do what had to be done, I heard a murmur of voices coming from one of the rooms, then a child’s voice, tired and pleading.

"No more! Please! I don’t want any more!" the child wailed.

More murmuring adult voices.

"No! No!" whimpered the child. And the door was closed.

My eyes welled with tears as my throat tightened and I fought for self-control, my stiff upper lip hopelessly compromised. I knew exactly what that child was feeling, because a child just like him lived within me. I had met her only a few days earlier. It had been all I could do, since then, to find a way to live as both a 56-year-old woman and that little girl whose voice I could no longer fail to hear.

It used to be such a short, easy story to tell.

"When I was five years old, I got infectious hepatitis. I was in the hospital in isolation for six weeks. The nursing staff was afraid of me because I was so infectious. When my parents found out how badly I was being neglected, they threw a fit, and it got better after that.

"At one point my liver and kidneys were shutting down and fluid was accumulating in my abdomen. The doctor said I was drowning in my own body fluids and would die overnight if something wasn’t done. He took me down the hall and ‘tapped’ my stomach to drain the fluid. Miraculously enough, I survived, even though the doctor hadn’t thought I would."

For 51 years, this breezy, dispassionate little narrative was the only story I knew—or at least, the only one I knew consciously.

I had gotten my first unmistakable hint that there was more to the story 20 years earlier, when I had to have surgery. Fear and anxieties so intense that they bordered on hysteria emerged from caverns of my soul that I didn’t know existed. As soon as the surgery was behind me, I was able to push all of them back into those dark recesses, where I did my best to ignore them.

Until cancer.

Most people are terrified when they hear they have cancer, and I was certainly no different. My terror, however, was almost literally overwhelming because it was doubled. I was 100 percent afraid of the cancer. Unlike most other cancer patients, I was almost as afraid of my doctors—the people I knew I had to rely on if I hoped to live. I was 99 percent afraid of them. The cancer was more terrifying—but not by much!

To most normal people, this doesn’t make sense. If I was relying on doctors to save me, how could I be terrified and mistrustful of them at the same time? In my rational mind, I know this, and I agree. It makes no sense. What I have learned is that your rational mind doesn’t call the shots when you have post-traumatic stress disorder (PTSD), and I have it big-time when it comes to medical care.

We’re used to thinking about military veterans having PTSD (aka "shell shock"). But we’ve learned that victims of other kinds of violence can also suffer from PTSD. Violent, potentially life-threatening events like assaults or even hurricanes are easily characterized as "evil." It’s not very hard to understand how those on the receiving end of them could be permanently traumatized in some way.

The idea that people can suffer from PTSD after being patients is a bit harder to grasp. After all, the medical system’s intent is not violence but healing—doing good and not evil. Right? Still, it happens.

Much of what we know about medical PTSD comes from studies of a new breed of patient: adult survivors of childhood cancers. From 12 percent to 20 percent of these long-term survivors have some sort of ongoing stress disorder due to their treatment, according to research done at the University of Pennsylvania. Often the emotions associated with these experiences go unrecognized, even for decades. But they do not vanish. Instead, they grow stronger with time and tend to erupt unexpectedly. Just as they did for me.

Medical researchers are just beginning to realize that even adults going through cancer treatments can emerge with traumatic disorders. The latest study getting a lot of publicity says that those who have survived adult cancers can also have stress and anxiety symptoms about their experiences for up to four years afterward. I snicker to myself; I strongly suspect they are grossly underestimating the staying power of the trauma.

Note that I am talking about "disorder," here. Medical PTSD is not the same as being anxious or stressed-out.

"Anxious" is when I have to get a root canal or even just a filling. I don’t look forward to it, but I can force myself to do it if I have to, and other than a bit of white-knuckling the armrests on the dentist’s chair, I’m more or less in control of myself.

"Disorder" is when you become a sobbing, hysterical mess when your doctor says you need an endoscopy. You are so distraught at the thought of having it done (not what it might show, but just the doing of the test itself and the vulnerability it requires) that they decide to shut down the clinic for two hours while you try to compose yourself. To be safe, they call in emergency back-up in case you totally lose touch with reality and become a danger to yourself or others.

Back in 1959, children in hospitals were treated pretty much like inconveniently small adults rather than like the children that we were. Some of us with life-threatening illnesses who survived as a result of the care we received have lived our whole lives with the psychological fall-out from those experiences. It’s the price we have paid for being alive at all. Given the alternative, I suppose it’s a price worth paying (knowingly or not) every day for half a century.