Daily Life | Disability | IBD
Two years into my Crohn’s disease diagnosis, I was formally diagnosed with PTSD related to a medical event. According to research by psychologist and Crohn’s disease patient, Dr. Tiffany Taft, one third of IBD patients have symptoms of PTSD, while “one-quarter reported a clinical PTSD diagnosis since disease onset, with most stating that PTSD was due to their IBD experiences.”
My PTSD diagnosis came when I told a neuropsychologist about the time a few months earlier when I went into anaphylactic shock–a reaction to a Crohn’s medication–and how I had been having nightmares about it, how every time I walked past the infusion clinic at my local medical center, I would feel my throat closing. I told him about starting a new Crohn’s medication a few weeks later, at the same infusion clinic. The day after the infusion, I choked a little while swallowing some cooked carrots. I felt my throat closing. I called an ambulance. My throat was closing again, just as it had before. I stood on the side of the road, waiting for the ambulance, pleading for it to arrive before my airway closed completely.
But my throat did not close. I did not have an allergic reaction. But I did have PTSD.
Fast forward 4 years, and my heart breaks for this younger version of me, who thought her PTSD diagnosis would remain related to that single traumatic medical event, rather than the deluge of medical trauma (plus a pandemic) that was about to hit her.
Like so many other Girls With Guts I know, I have had countless experiences where I’ve felt powerless over my own body, unsafe in my own body, afraid of my own body and/or what is being done to it in an effort to remedy the destruction illness causes. In some instances, medical trauma comes from harmful medical providers mistreating or dismissing people. But, even with the best providers, chronic illness can still be traumatizing.
For me, the trauma of chronic illness has been cumulative. One traumatizing medical event reinforces the trauma of the event preceding it. You think, “maybe I can heal from this,” and you start to try and rebuild your life. But then another traumatizing medical event swoops in, before you have had the chance to recover, and then another and another. And before you know it you are floundering, fighting to hold on to the part of yourself that is strong enough to keep fighting, strong enough to keep healing while simultaneously bracing yourself for whatever hell comes next.
During the worst moments of my PTSD, I find the inability to escape the most agonizing. I cannot run from the threat, or seek safety far away from the threat; the threat is my own blood, my own guts, my own immune system, my own DNA. As long as I’m living in my body, the threat is living too. I feel intense waves of claustrophobia, my skin crawling with the urge to break free from myself. I scan my body repeatedly, constantly looking for any sign that it is about to erupt again in any of the many horrific ways it has in the past.
My head spins in a panic: “The last time my stool had mucus in it like that, I had a severe flare that took years to get under control! Is that going to happen again now?!” “The last time I felt nauseous and dizzy like this, my adrenal glands completely shut down for 10 months. Is that what this nausea is, or is it another migraine attack?” And on and on the hyper vigilance and questioning goes, day and night.
To make matters worse, PTSD itself can cause or worsen physical health problems, creating a vicious cycle. New or worsening physical health problems land us right back in the clinics, urgent cares, emergency rooms, and hospitals where the initial trauma happened.
Earlier this month, on the 5 year anniversary of my Crohn’s diagnosis, I had an appointment at my local hospital for some neck problems I’ve been having. Every time I go to my local hospital, I am flooded with traumatic memories. But, oddly, I always find it hard to leave; I go to the bathroom again after my appointment even if I don’t need to, I sit down in the lobby on my way out, I drag my feet as I walk through the parking garage, and I sit in my car for a bit.
I have lost pieces of myself in that hospital over the years. Good pieces. I’ve lost so much of myself. I want the old version of me back, the version that trusted her body, the version that hadn’t learned the acute vulnerability of the human body firsthand. I look for her every time I’m there.
Different parts of her haunt me in different parts of the hospital. I try to grab hold of her while I’m there, thinking that if I stay long enough I can bring her back to me. But I can’t. I feel future me there, too, and she haunts me more than anything. “Are my future medical experiences just as traumatizing as the ones in the past?” I long to ask her.
I hope there is a future me who has recovered enough to write a blog about how to heal from and cope with ongoing medical trauma as a chronically ill person. I am not that person, yet, and I do not know how long it will take me to get there.
But I do know that medical PTSD in the IBD community and in the larger chronic illness community is incredibly common. Becoming traumatized from your illness–and from the way society and the healthcare system reacts to your illness–is almost a ubiquitous aspect of chronic illness.
But, I wonder, does it have to be that way?
Though I feel powerless over my own body and my own PTSD much of the time, I find empowerment through the idea that we together, as a community, have the collective power to advocate for policies and practices that reduce medical PTSD, better educate physical and mental healthcare providers on medical PTSD (and address the trauma that providers experience within the healthcare system as well), and create opportunities for healing for us all.