Is Chronic Illness Trauma a Thing and Do I Have It?
The short answer is: I don’t know. This would be an incredibly short article if my answer was simply yes.
I asked the question because I’ve seen a change in myself, in my reaction to pain, in my anxiety levels surrounding medical facilities and procedures, and in my confidence in healthcare providers. And I feel like my ankylosing spondylitis is well controlled, for the most part!
My chronic illness story
I was diagnosed with ankylosing spondylitis seven years ago, though my symptoms began much earlier than that. In my 20s, I was diagnosed with endometriosis and had two related surgeries, one minor and one major. The pain from both of these diseases have haunted me, sometimes quietly and sometimes deafeningly, for as long as I can remember.
And for more years than not, I’ve managed the pain and discomfort of these diseases without direction, confirmation, or assistance from a medical expert. That’s because for nearly 15 years my pain and symptoms were dismissed or explained away as muscle issues, bad posture, athletic injuries, and the list goes on.
For the longest time, I believed these doctors. I trusted that I did not need X-rays or MRIs, that my pain was insignificant, controllable with NSAIDs, and that everyone experiences this type of pain. So when I finally received my AS diagnosis, I was both shocked and relieved.
Most of all, I was resentful. I resented all of those doctors who did not push further, who dismissed my pain as inconsequential, and who told me that I was fine.
The resulting trauma
It took me years to come to terms with my AS diagnosis and learn how to manage the symptoms. Finally, everything seemed manageable. That all changed in the summer of 2021 when I first noticed left side pain in my mid-to-lower abdomen.
This time, my doctor’s took me seriously (for the most part). My general practitioner ordered bloodwork, x-rays, and an ultrasound. His prompt response left me hopeful, but the diagnostic procedures left me with more questions than answers. My ultrasound picked up an endometrioma which lead me down a path to major surgery, but the surgery did not resolve the pain.
So I saw a GI doctor, got a CT scan, an MRI, more bloodwork...and nothing. Then my rheumatologist sent me for more x-rays and encouraged me to continue to follow-up with the GI doctor.
Though my current coalition of doctors are taking steps to locate an issue, I cannot shake the feeling that there’s some underlying cause that’s simply not being unearthed. And after being diagnosed with two chronic illnesses already, it’s hard to convince myself that this pain is not a symptom of another major illness.
I don’t know if medical-related trauma is a recognized type of PTSD, but when I begin to feel chronic pain or irregularities that don’t seem to be related to my AS, my anxiety levels go through the roof. I begin to Google incessantly, worry constantly, and close myself off from the outside world. When I receive normal test results back, I have trouble believing them. I search the radiologist’s notes for any cause for concern.
I feel like I’m always on the look-out for the other shoe to drop. And while I’m rather paranoid that every new pain may lead to another chronic illness, I also find it difficult to visit a medical facility because of my string of bad experiences. Luckily, I can rely on my partner for reassurance and for help staying off of Google!
Research into medical-related trauma and trauma related to chronic illness simply is not there. One notable article suggests that PTSD does not need to manifest from a singular traumatic experience, but can arise from “cumulative adversity”, i.e. the collection of smaller traumas from medical experiences.1 This article also acknowledges that “medical and surgical events appear sufficiently stressful to precipitate PTSD sequella or to exacerbate maladaptive coping among PTSD patients."1 In the end, there may be some validity in all this.
As I said at the beginning, I don’t know if Chronic Illness Trauma is a thing, and if it is, I don’t know if I have it. But I know the anxiety and paranoid I feel is real. I cope by leaning on my partner and being honest with my doctors, but even that can be difficult. I’d love to hear any input on this subject. In other words, who can relate?
How often do you have to cancel plans because of AxSpa symptoms?