The Weird Pitfalls of Healing Yourself
And how one misdiagnosis has nearly killed me, twice
A few weeks ago, I participated in a week long spiritual event that was basically 6 days of intense meditative states. There’s a lot of fun research on brainwave changes when we do spiritual things, but what’s important to know is I don’t do this often. And definitely not for a week straight. By the end of it, I was having a hard time sleeping. And since my brain is now an integrated masterpiece of new neural connections bridging lifelong dissociated divides…let’s just say there are learning opportunities.
Apparently, I sometimes lose the ability to sleep now. It’s only happened twice, but both times after about 36 hours of not sleeping, my self-cleaning process kicks off anyway. What I mean by that is I go into a dreamstate whether I’m asleep first or not. And the problem with that is I do not appear to have the ability to wake up if I’m still conscious when the self-cleaning mode activates.
Our minds are constantly creating clutter throughout the day. We are bombarded with information, we have thoughts about that information (a lot of it scary, or anxiety-filled), and our bodies respond to each and every one of those little electrical impulses. When we’re asleep, our bodies have a chance to communicate with those extra thoughts and the ability to process becomes much smoother. Think about the last time you had a really intense dream. If you focus less on the details of the dream, and more on how it made you feel while you were in it or how it felt after it was over, was there any sort of resolution you can pinpoint? Because for me and my dreams, it’s almost like my body sends the message of “hey, this recurring thought about being rejected by family members has no real-world way of resolving and it keeps pinging in the heart region, so we need to resolve this issue so a heart attack doesn’t occur. Let’s solve this emotional puzzle in a dream” and then I’d probably dream that I’m visiting family for Christmas and oh-no now there’s a zombie attack but all I can focus on is how nobody is eating the pie I made from scratch. Dreams are an easy way for all the junk we accumulate in our minds to work their way out through our central nervous system, and if you’re aware of the dream you can simply enjoy the weird and wonderful ride you’re on while your body gets to remove excess electrical impulses of anxiety while you sleep.
When you’re unable to go to sleep, likely because your pineal gland was overstimulated and excess dopamine shut down your melatonin production - well, usually people just stay awake. No self-cleaning process starts, because for a neurotypical person there wouldn’t be a bunch of re-routed neurons. For me, well let’s just say my brain isn’t exactly connected the way one would expect. How could it be? I’ve been severely dissociated since I was 4 years old, and only recently purged the freeze response I’d been in all this time. So, now I get the fun of exploring what happens when insomnia strikes for me. Which adds to my frustration with having such a sensitive body, because I already can’t tolerate most medications, and I’ve had to cut caffeine from my life completely (just a few ounces of coffee can put my blood pressure and heart rate into a hypertensive crisis, despite being at healthy levels any other time).
For myself, it’s merely a frustration and some lifestyle changes. And figuring out what at-home sedatives could work in an emergency, without stimulating an allergic reaction (it’s taken me 10 months to finally get a PCP appointment, so I get to figure this one out soon). When it comes to trusting others, especially doctors, it’s clear that I have to overprepare myself….because the consequences could very well be deadly for me.
I would love to fully share everything that happened to me at Yale New Haven Hospital, but honestly the details suck and I’m not okay enough to lay them all out again. But the basics are this - on two separate occasions I experienced insomnia which led to delirium. I was misdiagnosed at the ER the first time it happened (when the insomnia and delirium were actually due to the flu, though that wasn’t even tested for until halfway through my incarceration with them and then was never treated) and thanks to that misdiagnosis and active dismissal of my dissociated brain, I never received necessary medical treatment. And was, instead, locked up in the psych ward and mistreated. Twice.
The first time, the ER doctor ignored the fevers from prior days and when my husband told him I had DID he said “Oh no, she can’t have DID. That’s far too rare. She only thinks she has it. She is clearly having a manic episode due to bipolar disorder. Women in their 30’s and post menopause get it all the time.” They also never told my husband that they were admitting me to their psych ward, because he brought me in after finding me on the floor of our shower. I’d spent the evening prior deliriously channeling Gaia (Mother Earth) who was teaching me how to be stone. I spent the whole evening dreaming of how it felt to become an island, and was physically moving in ways that felt like intense yoga poses…despite me not really knowing any, it helped alleviate the severe pain I had throughout my body. When I dreamt that my lungs were full of lava, Gaia told me I needed to learn to become water so I crawled into my shower and turned it on - I probably spent an hour sitting in cold water, presumably to lower my body temperature. My husband found me in the shower when he woke up. That’s why he took me to the ER - he thought I had brain swelling or something. Four days into my stay at the hospital, when I was finally transferred from the holding area to the actual psych ward, a nurse swabbed my nose because of how much I was coughing. It came back positive for the flu, they left me in a conference room overnight until they could move someone, and I spent the rest of my time with a mask on my face and isolated to a room by myself. On the outside, my husband and my therapist were trying to get answers about why they’d put me on a bunch of high-dose meds (that I had a fun allergic reaction to), why they’d even put me in the psych ward, and how the hell to get me out and home. Funny enough (in a sad way), the only thing any of them could say was that I “presented as disorganized” in the ER. Yep. Presented as disorganized. But because I am female-looking, in my 30’s, and giving a TEDtalk on Schitt’s Creek to the staff in the ER, it couldn’t possibly be anything except bipolar. I lost my voice (thanks to the severe dehydration and meds) and couldn’t even talk to the staff, which was fine because nobody wanted to hear what I had to say anyway. They didn’t even treat the flu symptoms I was still having, either. My husband brought me cough drops - it was the only relief I got until I finally got home. I spent the summer with a therapist working on my PTSD from that whole situation.
A few weeks ago, after the spiritually-heavy meditation week, I lost my ability to sleep again. After 36 hours, the dreamstate kicked off and I was stuck again. I wasn’t sick this time, but I was also unable to eat or drink. My husband didn’t want to risk the hospital screwing up again, and we hadn’t been able to see a PCP yet for on-the-ground assistance, so he waited a few days to see if I’d wake up on my own. Unfortunately, the dehydration resulted in me physically collapsing as he tried taking me down the stairs to get me in the car. He was going to try a hospital near Hartford, but I was so weak I couldn’t move. He called an ambulance, and they took me to the nearest hospital. You guessed it! It was Yale New Haven again. And this time, despite the fact that my husband told the EMT’s it was insomnia-related and delirium - nobody cared the moment I was brought in. He wasn’t with me, and my file said bipolar disorder….so I was admitted to the psych ward again.
This time, however, I was more aware (just insomnia-induced this time, no flu to cloud everything) and the only pill they gave me was for anxiety (though in the notes, they said it was due to my severely high heart rate), which had the benefit of knocking me out. I think I only slept for about an hour, but that was all I needed to wake up. I spent the next couple of days asking for as much water as possible (my voice was gone again, thanks to the severe dehydration), and then trying to get anyone in the psych ward to listen to me and help me understand what was going on in my head. I explained everything I knew about DID, about these specific instances of insomnia, and about what I’d been experiencing. The only response I could get from any of the psychiatrists was “it’s a manic episode due to bipolar.” Fucking infuriating. Like, my brain is different but I’m also a well educated person in this field. A manic episode due to bipolar does not end because the person was able to finally get a little bit of sleep. This time, I literally only got an hour or two before I was back in my conscious state without being stuck in a dream. And I only slipped into the dreamstate (my self-cleaning cycle) after 36 hours of no sleep at all. No other symptoms of mania, and definitely not at the extent that is required of this diagnosis according to the DSM-5-TR.
The worst part in all of this, though, is that throughout my second stay in the Yale New Haven Hospital psych ward, NOBODY thought to do anything about my bloodwork. I didn’t get access to my medical records until I was home, and looking at it you can clearly see that I was in a state of acidosis. All my vitals pointed to severe dehydration, with my kidneys and liver showing signs of damage. I came into the ER in an ambulance because I’d been too weak to go down my stairs and I fell. I had bruising on my arms, on my forehead, and I had a broken toe (something I’m still healing on my own) and none of that information was relayed in the ER. I was simply acting weird, talking funny, and my chart said bipolar so nothing else mattered. What I needed was a sedative and an IV drip for fluids. In fact, my dreamstate had become me in a desert watching the world dry up around me. My body knew what was going on, it just couldn’t get me to wake up on my own (even though it tried by giving me nightmares like the desert). And when I woke up, I saw a man exposing himself and screaming while nurses watched behind a plexiglass workstation. “Fuck, not again” was all I thought, and I spent the next week practicing my skills in trauma navigation. I’m happy to report that this time I don’t have the PTSD symptoms I had from the first misdiagnosis and mistreatment, but it’s definitely impacted me. My foot was never even seen, and my poor dehydrated body was never attended to at all. I was the one filling myself with water, which had some interesting side effects since I wasn’t able to get anything with extra electrolytes.
My medical issues have been ignored, twice, by this hospital. And the sad truth is I don’t really expect better from any other. Ever since getting the DID diagnosis, I was always terrified of what could happen if I’m in need of medical care and I’m dissociated somehow. People know so little about the disorder, and know even less about what happens when someone has healed it to the point of integration. And it seems that just telling everyone they have bipolar is the easiest way to shut someone up and fill them with pills, so they ignore literally everything else that could be going on. My husband was ignored, the EMTs that brought me to the hospital were ignored, and most importantly I was ignored over and over again. It’s like something from a psych 101 textbook, but clearly is just the state of healthcare right now.
As for me, I do have my PCP visit next month and I’ve already created an advanced medical directive that clearly outlines if I appear to be having a manic episode, that is a misdiagnosis. I need a sedative and IV drip (and my husband is better prepared to advocate for me now, too), and then to go home and make whatever lifestyle changes are necessary to keep the insomnia from happening again. I just need a failsafe way of being this Ron Swanson meme every time I interact with hospitals:
Oh, and if you’re wondering I did seek lawyers the first time and nobody was interested in helping me. I then filed a complaint with the hospital that they investigated, then found that they’d done nothing wrong, so I filed a complaint with the state of Connecticut that I haven’t heard back about but ….don’t exactly have high hopes around. This time, my health insurance actually called (go Cigna, I guess?) and I spoke with a super helpful person who filed a formal complaint from their end against the hospital. I still don’t know if that will do anything, but I do know that sharing what I’ve been through has at least helped me process it…and find ways to protect myself from the inevitable shitshow I could find myself in again.