I became (without realizing it) a strong advocate for participatory medicine at the age of 5, when I was hospitalized for two back-to-back events. The experiences created a lot of trauma for me, which lived in the subterranean caverns of my mind for five decades, only showing itself in recurring nightmares that I couldn't explain and odd things I did from time to time--again, that I couldn't explain.
In 2009 I was diagnosed with inflammatory breast cancer, and the trauma emerged once and for all into full, florid visibility. I was 100% terrified of the disease I had. What most of my doctors simply could not understand was that I was 99% terrified of them! But I was. It wasn't misplaced fear of my disease. It was totally genuine and deeply rooted fear of them.
I have spent the years since then as a grateful cancer survivor--but also as a medical PTSD patient, trying to understand what happened to me at age 5 and again in my mid-50s, how it has impacted (and continues to impact) my life, how to make as much of it go away as possible...and how to manage the parts that just won't go.
Being a part of a community devoted to empowering patients has been very helpful to me as an mPTSD experiencer. Being an engaged and fully empowered patient is, I feel, important for all patients, regardless of age or diagnosis. For people like me, who have a terrifying medical past, it is vitally important. It can mean the difference between being able to get the medical care we need or living in pain and ill-health (not to mention gut-wrenching fear)...or even dying.
I was unbelievably pleased to find a name for what I needed, as a patient: participatory medical care. And I was incredulous to find that there was this group of people dedicated to furthering its cause. I hope that I can help that cause along by being a voice for the medically traumatized.