Lived Experience of Health Anxiety and Medical Trauma After Brain Surgery
Having worked in the counselling field for over five years, alongside my personal experience having gone through several medical procedures, I noticed how rarely people share the granular emotional reality and challenges of undergoing brain procedures alongside neurodivergence, which led me to share my own lived experience as a practicing neurodivergent counsellor who actively navigates health anxiety and medical trauma.
My Diagnosis
Apart from the mental health diagnoses I have, I was diagnosed with a Cerebral Arteriovenous Malformation (AVM), an abnormal tangle of blood vessels connecting arteries and veins in the brain (Tanaka, 2025).
What followed were two embolisation procedures, a type of medical intervention where, while physically awake, I remained entirely aware of my surroundings, listening to the medical team and feeling fully present, yet unable to move my own body. Even now, I sometimes catch myself wondering if those moments were real, because while I remember everything, reflecting back makes the whole experience feel surreal, almost like a dream. Following one embolization procedure, I flew to Japan for another embolization procedure and a 12-hour craniotomy, which is an experience that leaves me grateful to my family and medical team, while fully recognizing the privilege that made such care possible. Having lived through the entire experience, and now with several years behind me, I find that the long-term impact of health anxiety and medical anxiety is rarely discussed, especially from the perspective of someone who experienced it.
Health Anxiety
Health anxiety, also known as illness anxiety disorder (IAD) after replacing hypochondriasis in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), exists on a continuum ranging from mild concerns to severe distress, with IAD representing the severe end of this spectrum. It involves a persistent fear and preoccupation with the belief that one has, or is at risk of developing, a serious illness such as cancer, ALS, or a heart attack, often stemming from the misinterpretation of normal bodily sensations as dangerous (Asmundson & Fergus, 2019).
For me, I didn’t experience health anxiety right after surgery, but noticed it developing gradually over the years before intensifying over the last five-plus years, a shift connected to my late autism and ADHD diagnoses, which provided the language to finally name my lived experiences and somatic responses.
Medical Trauma
Medical trauma is a set of psychological and physiological responses to pain, injury, intensive care unit (ICU) stays, frightening treatments, or life-altering diagnoses, and unlike external traumas the threat in medical trauma is often internal and ongoing inside the body. (McBain & Cordova, 2024).
For me, health anxiety and medical trauma used to show up as avoidance, where I would delay seeking care or cancel appointments because the anticipation felt overwhelming, and as hypervigilance, where I would monitor and interpret every physical sensation which led to constant reassurance seeking behaviours, hyperarousal in clinical settings, and heightened reactions to sensory triggers like the sound of clicking or beeping of medical equipment. Experiencing "scanxiety" (Bui et al., 2021) from undergoing multiple MRI and CT scans caused physical sensations to surface even during routine imaging for the first few years following my procedures.
Why Our Brains Make Medical Settings Harder
For those of us who are neurodivergent, medical settings can be even more overwhelming and anxiety-inducing because of the added sensory input and social complexity. To give an example from my experience, if we think about a medical appointment, there is constant uncertainty, harsh fluorescent lighting (especially when waiting for a procedure compared to a routine check-up at a clinic), unpredictable sounds, social scripts, people moving in and out of the space, and the expectation that we will articulate exactly how we feel to a practitioner who is a stranger with limited time.
If any part of this mirrors something in your own experience, you’re not alone. I have much more to say on this topic, including what it means for practitioners, society, and broader systems, but I will save that for a separate article.
References
Asmundson, G. J. G., & Fergus, T. A. (2019). The concept of health anxiety. In E. Hedman-Lagerlöf (Ed.), The clinician's guide to treating health anxiety: Diagnosis, mechanisms, and effective treatment (pp. 1–18). Elsevier Academic Press. https://doi.org/10.1016/B978-0-12-811806-1.00001-9
Bui, K. T., Liang, R., Kiely, B. E., Brown, C., Dhillon, H. M., & Blinman, P. (2021). Scanxiety: A scoping review about scan-associated anxiety. BMJ Open, 11(5), Article e043215. https://doi.org/10.1136/bmjopen-2020-043215
McBain, S., & Cordova, M. J. (2024). Medical traumatic stress: Integrating evidence-based clinical applications from health and trauma psychology. Journal of Traumatic Stress, 37(5), 761–767. https://doi.org/10.1002/jts.23075
Tanaka M. (2025). Basic knowledge and overview of brain AVMs. Journal of Neuroendovascular Therapy, 19(1), 2024-0037. https://doi.org/10.5797/jnet.ra.2024-0037
