Next in a series of very informal e-patient request blog posts, which feed the equally informal patient communities page. If you haven’t browsed the series you might find it interesting to see the kind of information people exchange for some conditions … and for others, we got nothing. Welcome to the internet!
This request is from e-patient Brenda Denzler, shown here in (characteristically) two comic settings. She’s seeking help for an issue that’s been with her for her whole life.
The doctor she mentions is Ryan Madanick @RyanMadanickMD, whom I’ve met on the conference circuit (particularly at Mayo social media) and online!
She sent this email. (In a comment I brought up EMDR as a trauma treatment, but I don’t know a lot, and besides, I’d like to hear more about other child medical traumas.)
My gastroenterologist was impressed with my preparation as a patient of his and referred me to your site. I’m not sure what it means to be your “current or potential client” – but am taking a chance by contacting you this way, anyway. [I don’t take “clients.”]
In late 1958 and early 1959, I had two medical situations arise. I was 5 years old. Both were traumatic, but I probably could have gotten over the first one had the second one not occurred—and so soon afterward. For the second situation, I was hospitalized in isolation for six weeks and came within hours of dying, at one point.
I have spent my whole life since then with medical PTSD—but I wasn’t consciously aware of it. It ruled my life in countless ways, all without revealing itself overtly. It finally emerged into brutal conscious awareness when I was diagnosed with inflammatory breast cancer in 2009. The genie has refused to go back into the bottle since then, and I have been in counseling and self-education to try to reduce my levels of arousal when it comes to invasive medical situations.
I have found that there is very, very little information out there about the long-term psychological and emotional effects of early childhood hospitalizations. I mean like, “What happens when these children from the 1940s and 1950s and 1960s have become adults and must engage with the medical world again? How do their previous experiences shape what they are able to accept, and how they are able to accept it, when they become adults? How do they cope, when they realize they have medical PTSD?”
We accept and acknowledge the likelihood of long-term trauma resulting from rape. We accept and acknowledge the likelihood of long-term trauma resulting from child abuse. We accept and acknowledge the likelihood of long-term trauma resulting from war.
But we barely accept and largely to not acknowledge or honor long-term trauma resulting from medical treatment—no matter how necessary that treatment may have been at the time.
I need a community. I need fellow sufferers to hold my hand, from time to time. I need a community of people who know EXACTLY what I’m talking about, and who do *not* judge me to be ungrateful and selfish because, hey, I’m alive now, aren’t I? So what do I have to complain about? Right?
Any ideas on this topic?
Updates 8/24: Two new comments today with additional information about PTSD – not specific to medical PTSD:
- First comment is about a Vanity Fair article this May that makes the condition vivid and summarizes lots of research
- Second comment is about the polyvagal theory first proposed 20 years ago, suggesting that the vagus nerve has two distinct parts, and the more primitive one takes over (perhaps causing this condition) when the more developed one “can’t handle it” anymore.
Thank you to all who are contributing to this discussion!