Last week, I got the clean-out-the-closet bug, and I decided to start with the bathroom medicine cabinet. In true Marie Kondo fashion, I pulled everything out of the cabinet, and dumped it all into the sink, filling it up with random bottles of pills and personal hygiene products. After wiping down the empty shelves, I examined each item in order to decide whether to keep it or throw it away. Quickly, I discovered that this wasn’t an ordinary clean-out-the-cabinet moment. This was the moment that I had chosen to throw away all of the expired bottles of medication from my illness in 2011.
The bottles had been sitting there, undisturbed, for nine years, because I wasn’t yet ready to look at them, and the idea of letting go of any of the medications that helped stop my death was terrifying. After a pause and a deep breath, I threw every bottle into the trash, except for the zofran. After nine years, I’m still not ready to throw away an expired bottle of anti-nausea medication that I no longer take. That’s how traumatized I am by suffering through a year-and-a-half of nausea and vomiting.
Ironically, I had the time to perform this mini purge because I was listening to a continuing education course taught by Dr. Bessel van der Kolk (see below for a link to his website), a prominent psychotherapist who wrote the book The Body Keeps the Score (see below for a link to purchase the book), which is about how our internal nervous systems hold trauma, and the importance of physically working it out instead of trying to think it away. The difficulty I had with throwing away bottles of expired and unused medications is an excellent example of my body holding the trauma of my illness, and the act of throwing those bottles in the trash is one of many physical ways that I’ve moved tiny bits of trauma out of my system.
Just at the end of my illness, as the nausea was passing, I scheduled a massage. I thought that it would be nice to receive some caring touch after such a terrible experience. I’d never met the massage therapist before that massage, and I never went to see her again, but that massage was the first time I experienced how body work can move trauma. When the massage therapist touched the place on my lower back where I’d had a lumbar puncture, I began to cry. The tears intensified, and flowed down my cheeks freely, as she touched other places on my body, such as the inside of my left elbow where I’d once had so many IVs that I had track marks.
As I continued to move through my house, throwing out remnants of my past, Dr. van der Kolk said something that gave me pause, and I stopped working so that I could listen more closely. He said that there are two experiences that lead to the formation of Posttraumatic Stress Disorder. The first piece is the traumatic experience that happened, and the second piece is not being seen and supported by your community.
He gave the example of the destruction of the World Trade Center on September 11th, 2001. According to Dr. van der Kolk, very few people who witnessed this terrible event developed PTSD because they were supported openly by their communities. There was no shame in what they had experienced, so they could speak authentically about it with each other, and receive open support from others who understood.
However, in many more personal traumas, the experience of being supported and witnessed is missing. For rape victims, there is a wall of disbelief and victim blaming. For incest survivors, there is shame, and years of fear that if they tell, things will only get worse. Silence breeds shame. The more unable the victim is to share openly about what happened, the more the shame grows, leading to the perfect breeding ground for PTSD.
As I stood frozen, listening to Dr. van der Kolk explain how it isn’t just the traumatic experience that leads to PTSD, it’s also the quality of support from the community, I began to realize exactly why my illness was so intensely traumatic. The medical community did not see me. Instead of believing what I told them about my neck injury and subsequent illness and helping me to find a treatment, they told me that the neck injury couldn’t have been the cause, and that it was really only anxiety. Then, they prescribed anti-anxiety pills and sent me home. Here are a few of the things that medical providers said to me during my search for help:
“Your symptoms don’t make sense.” (Said by the first neurologist that I saw).
“Oh, you again?” (Said by an ER nurse who must have attended me on a previous emergency room visit).
“You seem pretty anxious. Maybe you should admit to yourself the possibility that this is all just caused by anxiety, and perhaps some mild depression.” (Said by an emergency room doctor).
“I think this is something that is going to get better with time.” (Said by yet another neurologist).
You get the idea.
They didn’t see me at all. They invalidated my experience and minimized the fear that I was feeling as a result of severe physical symptoms; not as the cause of those symptoms. Perhaps even worse, because trained nurses and physicians, without any evidence, blamed what I was experiencing on anxiety, so did some of the people in my life that I desperately needed to validate and support me. As a result, except for a couple of incredible people who truly stepped up to the plate, I went through a year-and-a-half long illness alone.
It’s been my conviction since the time of my illness, that the callous treatment I received from medical practitioners made me sicker, but I’ve had trouble articulating exactly why. Suddenly it’s clear to me that each time a doctor told me that it was probably just anxiety, or a nurse greeted me with “Oh, it’s you again,” when I went to the emergency room, my nervous system was becoming more and more traumatized by not being seen and helped.
Unfortunately, this treatment is deeply rooted in the medical system due to the medical history of hysteria (see link below for additional articles), which says that people (most often women) often have medical symptoms that don’t have a medical cause. These symptoms are caused instead by the repressed emotions of the patient. While this idea is now called other names, like somatoform disorder, the idea is still alive and well, and doctors are encouraged to root out the “hysterics” from the “truly sick” people so that they can focus their efforts on people who are treatable. Even when the patient denies being anxious or depressed, the doctors don’t trust them because the very foundation of the idea of hysteria is that the patient is repressing the emotion. Medical syndromes that used to be dismissed as hysteria include: asthma, fibromyalgia, chronic fatigue syndrome, and endometriosis, and epilepsy, just to name a few.
As a result, patients who don’t readily fit into a diagnostic box are often dismissed without any testing or treatment. In a medical system where patients often don’t get to see the same doctor again, or they choose to change doctors after not being heard, that original doctor never learns the true diagnosis, if anyone ever does. Diagnosis and treatment are delayed (if they ever happen as many people give up), often leading to disastrous medical outcomes for the patient. I’ve read stories of cancer patients who died, but could have been saved if the doctor had done a simple test instead of sending them home with a “You’re fine. It’s just anxiety.”
I would like to submit that the damage caused by the idea that repressed emotion is the cause of outside-of-the-box symptoms is even worse than missed diagnoses and delayed treatment. It is also the cause of medically-induced trauma. Patients whose terrifying medical experiences are dismissed out of hand without testing, are experiencing both of Dr. Bessel van der Kolk’s criteria for PTSD; a traumatizing event (the illness) and an unsupportive community (the dismissive medical professionals).
It is my hope that by sharing this realization with you, I’m taking a step towards changing the way that the medical community interacts with patients. It doesn’t cost anything to listen to someone, and the cost of not listening is great–in traumatized patients and lives lost.
If you have experienced, or are experiencing, a wall of disbelief from the medical system, you are not alone. Please continue to advocate for yourself. Keep asking to see another physician for a second opinion until you get someone that will help you. You are the authority on your own body. You live in it every day, and know what you are experiencing better than someone who met you 5 minutes ago and came into the room with the historical bias of hysteria.
In my own case, I went through several neurologists, until I got to Dr. Ian Purcell (see link below for his website), who is a super-specialist. He and his staff listened to me. They never once blamed my symptoms on anxiety, and through a combination of medication, physical therapy and yoga, I got well. Keep trying until you get to your Dr. Purcell.