It's Tuesday, February 18, 2025.  I'm sitting up in bed, in my room, though there is not much room for sitting up here because you only have like 4 feet (? maybe less?) of height to work with lol

Couple nights ago I was watching a movie I was kinda surprised I hadn't seen before.  I was a huge Wes Craven fan as a kid, but had never seen "THEY" (2002).  I acquired a VHS copy of it a while ago and finally got around to watching it.  I did not get any "Wes Craven *vibe*" from it tbh.  I looked up why that might be and found out his name was "slapped" on it for publicity reasons.  Turns out, he was not involved with the development/production of it, and even stated he didn't like it himself lol.  Additionally, there was a particular scene in it that made me *need* to turn it off.  It made me think about alllll of the stuff, too much, and all at once.  Here is an attempt to organize all that stuff:

In the US, when you leave the doctors office or get discharged from an extended hospital stay with a new diagnosis- I feel like you don’t really receive enough useful information about your new illness.  Depending on your resources, the best outcome you can expect will include: 

• A “diagnosis” usually made based on limited data and not enough available context. For example- a person enters a hospital while in crisis. The only available data the doctors will have is what they collect about the patient *while they’re in crisis*. They know little about the patient otherwise in regard to their regular daily life (what they’re like when not in crisis, interests/hobbies, lifestyle details, relationships, personality type, etc).
• A “treatment plan”, but one randomly assigned to you based on limited data.  It may not suit you or meet your needs in the end, but you will have to deal with that problem much later.  For example, one time I was put on a psych med while in crisis.  But after gathering much data over time spent *not* in crisis, I noticed it caused extended elevated blood sugars.  Since this directly conflicts with my T1D management, I had to stop this med and replace it with another.  But I didn’t know that until I had gathered enough data and noticed the pattern disruption.
• “Referrals" to new healthcare services that you will now rely on. The chances of these services helping you out, as they are made available to you, will also vary. Always a mixed bag where you must engage in long processes of “trial-and-error” before you find what works for you if you are able to find that truth at all.

It can be very frustrating, especially if your realm of interests/existing knowledge/expertise has absolutely nothing to do with medicine, biology, anatomy, or science at all. You are kinda forced to become a budding scientist yourself, which can be so overwhelming if you really were endeavoring to do something/anything else with our limited time here on earth/the mortal plane. It can also be frustrating if you are ill. Not everyone has the capacity to do this exhaustive research themselves.

I’ve spent a lot of time in healthcare settings being "treated" for a condition I still do not understand.  It affects my life greatly and has many toxic interactions with my physical condition. And yet- I have to continue to live with it, manage it, and try to understand it. But all while working from very limited and inherently flawed “data”.  I try to be kind to myself along the way, because this stuff does get complex and at times way too complex for me.  

Disclaimer: different people with this disease present differently, so I can only speak of my own experienced symptoms.  I prefer to not use the diagnosis term generally (“schizo-affective disorder”) because its only one of several different diagnoses I have gotten surrounding my struggles with mental health (but it is the most recently used one, after my lengthiest stay at a facility, so I will use it here rn).  I prefer to just call it my "schizo" stuff and leave it at that.  I never trust labels as provided by the DSM because history alone has proven them to be untrustworthy.  

My symptoms can include: 

• "apophenia" & "ideas of reference": apophenia refers to a brain activity that is constantly seeking patterns, sometimes between unrelated things.  Every human engages in apophenia to some extent.  Pattern recognition probably helped humans figure stuff out like weather forecasting, farming/agricultural practices, maybe math stuff? IDK, but probably helps lots of things!  Pattern recognition helps me personally when it comes to diabetic management (reviewing CGM data to see where blood spikes/blood drops happen, figure out why, and try to make sure you fix the disruption).  But, when this system is itself “disrupted” (or, when your brain is overstimulated/dysregulated), you begin to perceive false patterns - meaning, you attribute a pattern structure to actually unrelated/random things.  “Ideas of reference” are a type of apophenia, where “perceived patterns are interpreted as personally significant” (but this perception is also usually false).  An example from personal life:  I was feeling unwell one day, so my sweetie (life partner) and I went to a diner we had never been to before.  We both share a love of greasy-spoon diners, both find them viscerally comforting, and also love sharing our meticulous critiques of each diner lol (he likes his home fries extra burnt/crispy and cut into smaller pieces while I prefer bigger chunk pieces and prefer them soggy/undercooked; but we both usually agree that they should always be waaaaay over seasoned).  So we went to a diner called “Ritchie’s” in Hyde Park that day.  Since its our first time in this diner, I actually look at the menu.  I notice the diner logo has an “Rx” symbol, like on a prescription bottle, under the “R” in “Ritchie’s”.  I *immediately* panicked lol.  I start to look around, trying to catch the vibe of this place.  It does appear kind of “clinical” to me, as far as decor goes.  I panic more.  This is because one of my paranoid delusions that tends to flare up often is that clinicians are conspiring against me, attempting to “lock me away for good”.  (This is actually based in real trauma, as lots of symptoms of schizophrenia are, but thats a tangent for a different discussion entirely). Luckily, my partner and I have been together for nearly 6 years and he knows me/my illnesses quite well.  Sometimes/when appropriate, I run my paranoid thoughts by him for a “check-up”.  I point out the “Rx” to him.  He probably knew I was feeling dysregulated and was hyperfixating on this one seemingly small/unimportant detail.  He said- “Why don’t you just ask them why the logo looks that way?”  But, when in fear, I absolutely do not ask questions.  The safest thing always seems to be to flee (but this is also a common trauma-response in all humans).  He sees I am struggling with that option, so he turns to the waitress who took our order.  We were sitting at the counter, so she was right there.  This person was extremely sweet and was even delighted to hear his question.  She proceeded to give us a short history of her family’s business.  The diner used to be a pharmacy, run by her now-deceased relative.  When he passed, the family wanted to keep the business running in his memory, but no one felt passionate about pharmacies.  They decided to turn it into a diner/convenience store instead because they did feel passionate about food!  The “Rx” under “Ritchie’s” is simply an homage to him and his memory.  (I saved the menu from that day and keep it to remind me to ask questions, even when it’s scary or *feels* scary to do so.)
• "flight of ideas": a sudden bombardment of thoughts/perceptions/intuitions.  I hate this one a lot because it makes me really annoying to talk to during a flare up.  It leads to confusion, disorganized thinking, and when really bad - disorganized speech.  It can be very overwhelming, not just for me internally but for anyone I am attempting to communicate with.  When thoughts/perceptions/intuitions race too fast through your brain, it really is hard to keep up!  So I am not surprised that verbal/speech communication fails me at times like this, or any moment of “high stress”/anxiety.  But, on a good day - I appreciate flights of ideas.  When I make space for them, I actually learn a lot!  They help me understand concepts that are normally too much/too complex on a “normal” day, if that makes sense.
• paranoid delusions: for me, this is the monster that governs over all my other symptoms of this illness.  It is what it sounds like and probably results from all the other symptoms combined.  Some common paranoid delusions can be: thoughts of being watched/surveilled, thoughts of persecution (like, everyone is out to get you/kill you for some unknown reason to you), thoughts that others are “messing” with you such as teasing/bullying/everyone being “in on the joke” except you.
• catatonic state: an unresponsive state where you are no longer speaking, sometimes not even able to move, and no longer capable of responding to any sensory input/stimuli.  My only experiences of catatonic state both happened when I was deep in psychosis but I only know this information from clinicians/doctors after-the-fact, as I do not have any internal memory of these moments myself.
• psychosis: a description of a mental health state where the person experiencing it has completely detached from our collectively perceived “reality”.  This word can be used as a “diagnosis” in and of itself, or be ascribed as a symptom of a related illness (such as schizo stuff).
• “poor” hygiene & “chaotic” personal spaces
• reduction in movement ability/poor motor skills
• hallucinations: sensory experiences (sight, sound, touch, smell, taste) that are “falsely” perceived by the body/mind, when compared to our shared, collective experience of “reality”. 

Patient forums are VITAL to those who experience complex illnesses and/or combinations of complex illnesses.  Doctors usually fail us, especially in countries such as this one where integrative care (treating the body as a whole) is non-existent.  Your specialist is not in direct communication with your behavioral health team nor your dentist.  But should they be?  Absolutely so, in my opinion.  Because american healthcare doesn’t do this, it makes illness combos hard to learn about/decipher/treat effectively.  I have come to learn about and understand my illnesses through patient forums more than any “medical literature” or “advice” from doctors.  Forums are places where people talk openly and freely with others like them to figure it all out.  We share tips & tricks/hacks, management/treatment options and how effective/useful they are to us, plus so much more.  These experiences are deeply personal, but it seems that across the board, for most of us “schizos” these symptoms are typically not exclusive to being only negative or only positive.  Sometimes, its just background brain noise and you get used to it.  That was validating to hear from other patients because it is certainly not common knowledge and definitely no doctor ever told me that VITAL info.  In healthcare settings, I’ve only ever heard of this illness as a pathologized thing, one that needs to be like beaten with a stick or something.  (But I find this “treatment” method ineffective and try hard not to engage with it this way anymore.)  So why are sick people being told by doctors to beat ourselves with a stick??? This is likely due to mental health stigma which influences everything under the sun, including: media portrayals, medical texts, the structure and organization of healthcare systems, even schooling environments and politics/law.  It truly does make the head spin.  And it makes me paranoid AF as well lol

The TLDR of this post would be: schizos are not violent like in the movies!  Schizos are statistically more likely to have violence inflicted upon them.  They are likely more scared of you then you could ever be of them.