My body does not forget — which is a shame, because there are so many things I don’t want to remember. I have spent 20 of my 28 years in and out of doctor’s offices, MRI machines and pharmacies. Three big diagnoses reshaped my life in their aftermath, cleaving my time into before and after: chronic migraines, cancer and traumatic brain injury. But in between those definitive markers are so many other moments, some subtle, some jarring, that have changed me into the patient I am now.
And that patient is nervous because she doesn’t think you’re going to believe her.
So many doctors didn’t. When I was 20, I told a doctor that my voice had suddenly dropped an octave and my anxiety had spiked beyond control. The doctor told me to do yoga.
Two years later, I was diagnosed with thyroid cancer. The tumor in my neck was pressing on my vocal cords, changing the tenor of my voice. The overactive thyroid levels in my blood were sending me into sickening whirls of anxiety. The cancer diagnosis was almost a relief — after years of doctors telling me I was experiencing psychosomatic symptoms, there was finally proof. Something actually was wrong. I wasn’t crazy.
That patient still treads lightly now because she doesn’t know what you’ll say when faced with her extensive medical history.
When I was 23 and healing from a complete thyroidectomy while trying to get my chronic migraines under control, a doctor laughed and said, “If you were a horse, we would’ve taken you out back and shot you by now.” In my worst moments, I think of his words.
That patient also isn’t sure you understand consent.
When I was 24 and being prepped for my third surgery, I told the nurse I didn’t need a catheter, because I had previously had longer and more extensive surgeries without one. The nurse agreed. When I woke up, disoriented from anesthesia and unable to hold a thought in my mind, I felt something I didn’t recognize — a catheter the medical team had inserted after I was put to sleep.
It’s no secret that it is difficult to be a patient of any kind in this country. But to be a chronically ill woman is to see a side of medicine others can afford to ignore. Women in pain are taken less seriously, and given fewer painkillers, than men. Women are more likely to be told that the cause of their pain is psychosomatic, that it’s just anxiety, that they just have to relax. It takes longer for women in the emergency room to be assessed by medical staff than it does for men.
When my therapist told me that she suspected I have medical post-traumatic stress disorder, it took me by surprise — although maybe it shouldn’t have after two decades of experiences as a patient that left me distrusting of doctors and unsure of myself.
Although I live with chronic pain, a traumatic brain injury and a history of cancer that has to be checked on every year, I am constantly doubting what’s actually happening in my body. Am I really as sick as I feel like I am? Am I making it all up? I cling to proof of my diagnoses. Sometimes it calms me to feel the vessels throbbing in my temples during a migraine because it is physical and undeniable. On bad days, I reread notes I’ve taken during doctor’s appointments and underline the facts — I have a traumatic brain injury; there was a bleed in my brain; it will take years to heal.
Often, I find myself asking doctors I trust the same questions over and over again: Is this normal? Is this what you would expect? Will I ever get better? And underneath each of these questions is a deeper, more true one: Is this real?
Lara Parker, a writer who has endometriosis, said that after years of her pain being downplayed, she finds it difficult to trust her own thoughts and feelings about her illness. “I always have to play a game of, ‘Is this in my head or am I actually feeling it?’” Lara recently told me.
And with the experiences she’s had as a patient — ranging from being told her endometrial pain was a psychosomatic symptom springing from grief over the death of her best friend as a teenager to collapsing in pain and being taken to the emergency room only to be given ibuprofen and told she had a “bad case of the cramps” — it’s no wonder she, and other chronically ill people like her, find it difficult to trust what they know to be true. After one surgery, Lara framed photos of the proof of endometriosis in her body to serve as a reminder: This is real.
According to Quincee Gideon, a trauma therapist based in Los Angeles, these thoughts are hallmarks of medical PTSD. “Chronically ill patients gather experiences over years which create a deep sense of insecurity that they have deeply misjudged themselves, maybe they’re crazy, maybe they aren’t as sick as they think they are,” Gideon says. “That leads to bigger problems with self-concept and self-esteem.”
Another symptom of medical PTSD is disassociation from the body and feeling betrayed by it. I’ve only just begun to realize that other people don’t see themselves as separate from their bodies the way I do. My body is a wholly disparate entity, a bruised skin sack that I must fight with and barter with and drag around behind me. This disassociation, Gideon says, is a coping mechanism: “To survive something uncomfortable or painful, there has to be some disassociation away from the painful event.”
The key, Gideon says, is to work on reintegration: to tell myself that my body has always been fighting for me, not against me; that I know what is happening inside my body better than anyone else does; that my pain is real.
And I’m trying. I’m trying to listen to what my body needs without judging it. I’m trying to believe in my own pain. I’m trying to advocate for myself and make doctors listen.
I am trying so hard. But sometimes, living in a chronically ill body takes all the energy I have.