*potential triggers ⚠️*
It’s been a very trying and painful few weeks for me on so many levels. It’s making it quite difficult to focus on much of anything these days, including my writing. Lots and lots of trauma responses and triggers happening pretty much daily right now, one in particular started with a seemingly innocent email I received a couple of weeks ago that sent me spiraling even further. A hard and very honest conversation followed with my Psychiatrist.
The email was sent to me by a random stranger who had found a particular blog of mine online that I’d written last fall. Over the years since I started my Blog, I have received numerous emails from random strangers who happen upon it and reach out to tell me just how much they appreciate my honesty or how something I’d written had really resonated with them, or how deeply connected they felt towards me. It means the world to me every time I share my story, knowing I have helped even one person feel less alone. This stranger, though, had somewhat of a different agenda. I appreciated his intentions, but I never realized at first glance how much it would trigger my symptoms of PTSD.
His email began with, “Dear Kim, I came across your article, ‘A Win Is A Win’, which was a very difficult read. I do hope your symptoms have improved since you wrote that piece.” He then proceeded to introduce himself and his reason for writing me.
He told me that he is the Founder of a news outlet where he covers “the latest developments in psychedelic research and drug development” and then asked if I had participated in the clinical research trial that had just been published earlier that week. He attached the publication for me as reference. When I opened the link and began reading it, I knew immediately that it was in fact the findings from the trial I took part in 23 months and 1 day ago (but who’s counting) as the first thing I noticed was my Psychiatrist’s name at the top of the document, given that he was one of the lead researchers on the study. I hadn’t spoken to my Psychiatrist in a few weeks and had no clue that the study had concluded or that the findings had been published yet.
The stranger wanted to know if, after reading through the report thoroughly, I felt that the symptoms I have endured since that day had been “adequately represented” in the publication. He then wanted to know if I’d be willing to share my experiences with him further, including any updates as well.
I knew I had an upcoming appointment with my Psychiatrist in a few days and needed to discuss this all with him first, for many reasons.
He understood completely.
My mind became consumed for the next few days leading up to my appointment with my Psychiatrist because to answer the question, “do I feel as though the symptoms I experienced and continue to live with every day since, had been adequately represented in the publication?”, the short answer is an overwhelming NO!!
Although much of the report was written in scientific jargon and with charts I couldn’t quite comprehend or read, there was plenty I could understand. And when I finally got to share with my Psychiatrist that I had received a copy of the publication from this random stranger, we discussed it in great length and detail together. As I stated earlier, it was a hard, but very honest conversation, for the both of us. He completely understood how I felt my experience was not adequately represented in the publication and that my symptoms were very much glossed over. He let me know that the drug manufacturer had actually reached out to him directly at some point to specifically discuss my case when they read about my symptoms, and were obviously most intrigued to learn about my PGAD diagnosis, but that the “Ethics Board” did not approve any further discussion of my case, other than a basic one line, in order to try and protect me (it’s completely anonymous 🤔). **My participation in the trial lasted 6 months from treatment day, with follow up appointments every 2 weeks.
During our conversation, I once again reiterated to my Psychiatrist how I have never, ever placed any blame on him whatsoever for what has happened to me. It was my decision, and my decision alone to take part in the trial, but for the first time in almost 2 years, I told him that I do place blame with the two doctors who sat by watching me convulsing on a couch beside them for close to 6 hours straight and not once did either of them try to intervene or help me. By the time I finally came “down”, they jokingly stated afterwards “wow, that was quite a trip you had”. It is probably safe to say now, 23 months and 1 day later, that the damage that was done to me that day, the neurological damage done to my body that day is something I am slowly coming to terms with that I will have to live with for the rest of my days.
I know I probably sound like a broken record by now but the constant, unrelenting and unbearable tingling in my hands and feet, numbness and shakiness, brain zaps galore, very obvious tremors throughout my entire body, all day, a deep aversion to noise, a sensitivity to touch and of course the worst symptom of all; PGAD (in case you missed it: https://youareenough712.wordpress.com/2022/09/20/tmi/) have all led to a further decline in my mental health since last year and the reason I began the process of M.A.I.D, which now seems like another dead end (excuse the pun) for me.
I have so many regrets in my life, but I told my Psychiatrist during our appointment that my decision to participate in a study that was intended to give me a glimmer of hope at the time, has now become my biggest regret above all. He completely understood why and then looked at me straight in my eyes (over Zoom) and said to me, I too have so much regret for having you participate in the study. His words may not change what has happened to me, but feeling validated sure helped.
Before our meeting ended, he also gave me his blessing to go ahead and talk with the stranger more in depth, if I so choose to. He cautioned me though that he doesn’t want me to be exploited or get hurt or taken advantage of as he has seen others go through with media. I haven’t really decided one way or another yet, but I think if the stranger happens upon this article, like he did with the other one, it probably will give him most of the answers he’s looking for anyways.
#publishedreport #clinicaltrial #Psilocybin #regrets #mentalhealth #treatmentresistantdepression #anxiety #ptsd #youarenotalone #media #platform #trauma #triggers #medicalassistanceindying #validation #youareenough
YouAreEnough 