Thread by @SchizoScientist

Welcome to the first #SchizoChat! A (hopefully) weekly Twitter forum to discuss topics related to schizo-type diseases (i.e. schizophrenia, schizoaffective disorder, etc.) and help #EndTheStigma

Before we begin, please know that I’m not under any delusion that these will be far-reaching—yet. This account is less than a month old, after all. But I’m hoping to get a conversation rolling. Like what you see? Help spread this with the hashtag and RT! #SchizoChat

I’m going to be posting some fun facts into this thread every ~10 minutes or so. If you have questions about that fact please ask them over comments or DM—whichever you think is more comfortable. #SchizoChat

I'll respond to any comments as soon as possible, but I'm behind on my research so I'm writing these posts from my office as I work on some code. So please bear with me! #SchizoChat

I’d like to stick to the weekly theme for the most part (to give myself something to talk about in later weeks mostly) but I’m down to answer any questions you have. If you have an idea for another theme please let me know! #SchizoChat

So, a little bit about me. I’m a PhD student with (diagnosed) schizoaffective disorder (and a side helping of diagnosed OCD). I do *not* study these diseases professionally and am certainly not an expert but I do read about them a lot. #SchizoChat

If you notice I’m saying something totally wrong please let me know and I’ll fix it! I’m learning. I’d like to have started this when I knew a little bit more about the diseases, but I’m sooooo tired of the stigma so I’m raring to go. #SchizoChat

I’m a privileged individual so please note that I cannot speak to anything but my own experiences—I certainly can’t talk about the experiences of under-represented minorities, or anyone else with these illnesses. #SchizoChat

I’ll try to give sources when I’m stating cool facts (let me know if you have any questions, I can DM you papers because fuck paywalls) and I’ll try to remember to put content warnings. #SchizoChat

Remember, science is not set in stone! Our understanding of these diseases changes with every new paper. What may be viewed as “facts” now will be discounted by a new study in the future. That’s just how science works #SchizoChat

So, what is schizo? The prefix “schizo” is of Greek origin meaning “split.” This prefix is most commonly seen in the word “schizophrenia,” literally “split mind.” As we learn more about brains we are expanding the use of the prefix to other related illnesses too. #SchizoChat

As Dr. E. Fuller Torrey points out in his excellent book “Surviving Schizophrenia” this word is harsh! Harsh in its connotation, harsh in the way it sounds. Grating, unfamiliar, bad. #SchizoChat

Folks have recommended changing the word for a variety of reasons—it sounds bad, it’s associated with a brutal stigma (more on that later), and it perpetuates the incorrect stereotype that schizo-type disorders are “multiple personality” disorders #SchizoChat

Having “multiple personalities” is a very real but separate disorder now known by the term “dissociative identity disorder” or DID. But I digress. #SchizoChat

So why do I use the word, both in the hashtag and in my handle? Both because it connects the multiple diagnoses I have received (schizophrenia and schizoaffective disorder) and because the stigma is awful and I want to change it by forcing you to see it over and over #SchizoChat

Sooooo, what are schizo-type disorders? I use this to refer to diseases with the prefix, which include schizophrenia, schizoaffective disorder, schizotypal personality disorder, and likely more I haven’t read much about #SchizoChat

Even within these categories there are subcategories (like “paranoid schizophrenia” or “bipolar type schizoaffective disorder”) that are reclassified every time a new diagnostic manual comes out. It’s complicated! #SchizoChat

These are all related mental disorders, likely along a spectrum of symptoms. The defining feature of all is psychosis.

If you are psychotic, the things you experience are not real, even if you believe they are. #SchizoChat

CW: Self-harm

Psychosis comes in many flavors and can impact all five senses. You can hear things that aren’t there—just this morning I heard an incessant voice whispering my name. I hear yelling voices, or voices telling me to hurt myself. #SchizoChat

You can taste things that aren’t there. Sometimes all my food will taste like cinnamon (a flavor that I hate at this point) or everything tastes the way that rotting meat smells. Not pleasant. #SchizoChat

You can smell things that aren’t there. I will sometimes be overwhelmed with the smell of smoke, as if the house was burning down right around me. Or I’ll be in a public place and be so overwhelmed by the smell of rotting meat I’ll gag. #SchizoChat

CW: suicide

You can feel things that aren’t there. I’ll feel insects biting me or crawling up my leg, or hands grabbing my shoulders. Once when I was having a particularly rough time and contemplating suicide, I felt someone wrap their arms around me. #SchizoChat

You can see things that aren’t there. Sometimes it is just stuff moving in the corner of your eye. Sometimes it’s your brain misinterpreting things as something they are not—leaves blowing become corpses crawling, bookshelves become monsters. #SchizoChat

Sometimes these visual hallucinations are quite temporary—blink and they’re gone. Sometimes they stick around—no matter how much you tell yourself your partner’s face isn’t a skull, nothing you do can convince your brain that it isn’t. #SchizoChat

CW: sex

Probably TMI, but my partner has gotten quite use to my suddenly thinking his face is a skull in bed. I’ll simply say “sorry, I’m closing my eyes not because I don’t want to see you, but because I cannot see you right now.” #SchizoChat

Other times visual hallucinations aren’t based on something “really there.” I’ll see people standing in the middle of the road, monsters jumping at me in supermarkets, etc. Often it is still possible to determine what is real—monsters aren’t, but still make you jump! #SchizoChat

Sometimes it’s harder to determine what is “real.” Should I slam on my breaks for the person in the road? Last week I watched my cat lick her paw for 10 minutes, reached down to pet her, and realized she’d been in the other room the whole time. #SchizoChat

So, those are the five senses, each can have hallucinations. Do you need all five to be psychotic? Nope—auditory and visual are the most common. #SchizoChat

Another aspect of psychosis is delusions. You believe things that aren’t real. It doesn’t matter how much you *know* intellectually about reality. You can still believe these things anyway. In my experience it’s best akin to a sixth sense or a faith situation. #SchizoChat

A commonly seen example of delusions is the paranoid type most often portrayed in movies. You believe the FBI is out to get you, or that you are a spy with a secret mission, or that God is talking to you through the television. #SchizoChat

Oftentimes folks may not understand these aren’t real, and you can imagine that that can get dangerous really quickly. John Hinkley Jr. believed that the actor Jodie Foster loved him/would love him if he got her attention, so he shot president Reagan. #SchizoChat

Hinkley Jr.’s attorneys argued that he had schizophrenia (though some folks question that) and he was found not guilty by reason of insanity. #SchizoChat

This DOES NOT mean that every schizophrenic person, every delusional person, or every paranoid delusional person is violent or a risk! The vast vast majority of folks ARE NOT (more on the stigma later) #SchizoChat

But delusions can manifest in other ways too! To the best of my knowledge, I can currently recognize all of my delusions as such, but that doesn’t make them any less “real.” I *know* they are delusions, but I cannot convince my brain of that! #SchizoChat

It’s frustrating (especially as a scientist) to be confronted by my own clearly ludicrous beliefs, yet still believe them. I’ll think the streetlamps are talking to me through their lights, that all of the books on my bookshelves are watching me… #SchizoChat

…that I can “feel” the presence of unseen people in the corners of rooms or cemeteries, that my eyes are filled with parasitic worms. #SchizoChat

Pretty spooky at times. In general psychosis is pretty spooky (any excuse to use my current favorite gif). #SchizoChat

Sometimes they aren’t all that bad. I don’t intellectually believe in any gods, but I know in my heart that something is watching over me. Every time something goes well in my life I just *know* that they are looking out for me. #SchizoChat

Do you need to have delusions to be diagnosed with a schizo-type disorder? No! Do you have to be unaware of them for them to be a delusion? No! Do they always make you dangerous? NO! #SchizoChat

Hallucinations and delusions. They make up psychosis. Does being “psychotic” (having psychosis) automatically give you a schizo-diagnosis? Nope! #SchizoChat

Hallucinations and delusions can be the result of drug use, both recreational and prescribed (some common antidepressants can give you psychosis!). So can other ailments (thyroid disorders, brain tumors) and other mental illnesses. #SchizoChat

For example, bipolar disorder may result in psychosis during patients’ most manic or most depressed states. If that psychosis persists throughout all the swings, though, you could have schizoaffective disorder #SchizoChat

Schizoaffective disorder sits somewhere along a spectrum of what we call “mood disorders,” somewhere between bipolar disorder and schizophrenia. It used to be considered a type of schizophrenia, now it is technically separate. #SchizoChat

I like to describe it as a combination of symptoms of both schizophrenia and bipolar disorder when I’m in a good mood. When I’m in a grumpy mood I describe it as the angry love child of each. #SchizoChat

ANYWAY, having psychosis doesn’t mean you have a schizo-type disorder! But it is a good reason to see a doctor. #SchizoChat

Another note on words here: I use the term “psychotic” to describe someone who experiences psychosis and “schizophrenic” to describe an individual diagnosed with schizophrenia. That can be problematic #SchizoChat

Both terms are used as slurs to describe folks who are “crazy”—yet another ableist slur. Patients with these disorders already face a stigma and may want you to avoid these terms at all costs. #SchizoChat

Others of us, myself included, are trying desperately to reclaim these terms. My psychotic hallucinations are quite crazy at times. I appear like a “crazy” person in movies on my bad days (more on this later too). It’s my reality, I want those words. #SchizoChat

That doesn’t mean I want everyone using them incorrectly, of course. Stop calling the president a crazy delusion lunatic. I am those things, yet I consider my behavior to be substantially better than the president’s. #SchizoChat

Not sure how to refer to folks? Ask folks for their preference. Watch the ways they talk about their disorders. Think critically about why you are describing their symptoms to start with. #SchizoChat

So, psychosis is a defining characteristic of schizo-type disorders, but it isn’t the only symptom. This was especially hard for me to learn. I thought I’d be fine—I can handle the crazy stuff, after all! #SchizoChat

The things you “gain” from the disorders are positive symptoms. They are added to your life. The monster isn’t there, it’s an addition. But there are negative symptoms too. Things that are taken away. #SchizoChat

Please not that these symptoms are not “positive” or “negative” as in “good” or “bad.” I feel like I have worms in my eyes. That’s not really a good thing. #SchizoChat

Negative symptoms are “deficits of normal emotional responses or of other thought processes,” in the words of Wikipedia. They can significantly lower your standard of living and unfortunately they do not respond well to medication. #SchizoChat

You may feel little or no emotion—no joy in the things that you used to experience, no response to the bad things happening around you, no shame in the way you are behaving/functioning. Sometimes helpful, sometimes not helpful at all. #SchizoChat

You may start talking less (called “poverty of speech”) or may start to lack motivation. I’m not talking eh-I’d-rather-procrastinate-by-watching-TV sort of lack of motivation here. You can lack motivation to take care of yourself at all. #SchizoChat

Schizophrenic folks may stop performing basic hygiene tasks (brushing teeth, cleaning house, showering, etc.). It’s not that we forget, or that we suddenly decide that those things aren’t useful (in my experience). We just…can’t. #SchizoChat

This is especially frustrating for families. My dad is perplexed that I find it hard to shower. “Make a to-do list,” “force yourself to do it then give yourself a reward.” I try, it isn’t that simple. I just don’t have the energy or ability some days. #SchizoChat

It isn’t all days—sometimes I do really well, which is good because I live alone. Other times I feel like I need a caretaker, which really really hurts my self-esteem. I want to do these things, I HATE than I cannot, but I can’t. It’s hard to describe. #SchizoChat

There are also significant cognitive impairments—these cognitive impairments are the best indicator of a schizo-diagnosed individual’s ability to “make it” in society, whatever the hell that means to you. #SchizoChat

Cognitive impairment can include things like an inability to focus, poor memory (short-term, long-term, working memory, etc.), a behavior called “word-salad” when you start to exchange words (in speech, in writing, etc.) without realizing it… #SchizoChat

This word-salad effect can be “minor,” such as simply switching out similar-sounding words, or it can be more severe—folks will come across as talking complete gibberish. They may realize it or may not. #SchizoChat

Do all schizo-diagnosed folks experience these? Nope. Does everyone experiencing these symptoms have schizo-type diseases. Again, nope. A lot of these negative symptoms can happen with depression, cognitive impairment can happen under stress. #SchizoChat

…but of course, they are all potential symptoms of schizo-type diseases that psychologists and psychiatrists keep in mind when making diagnoses. #SchizoChat

The negative symptoms (especially the inability to take care of myself) really depress me, but not as much as the cognitive impairment. It’s so frustrating to be giving a presentation and mix up your words. Or write a paragraph that is total gibberish. #SchizoChat

It’s getting much harder for me to read and write and I’m losing my confidence in doing so. I used to love public speaking (weird, I know) but increasingly I hate it. #SchizoChat

The problem with writing/reading can come across as a late-onset dyslexia (another mis-diagnosis I’ve had). Ask me to read a string of numbers out loud—it can be 89462 and I’d say 89A6S. Or I’ll type 4s for As while I write out words—my muscle memory can’t save it. #SchizoChat

I have absolutely no short-term memory. Tell me a date/time, I may forget it as I am opening up my calendar app. I can’t remember what is in one tab when I switch to another sometimes. #SchizoChat

But I also have a ridiculously good spatial memory. I can drive cross-country once and I can tell you detailed directions about how to get there years later. Or I can find a quarter that I dropped in the middle of a grass lawn because I can walk my route. #SchizoChat

There are other seemingly associated symptoms too. I’m hyper-sensitive to most stimuli. Lights are too bright—I have to wear sunglasses inside. I’m very easily distracted (enough to warrant ADHD testing) and can be overwhelmed easily. #SchizoChat

I have panic attacks quite often in public places (especially big cities) or when something is too noisy. I’m super sensitive to changes in temperature. It’s all very anxiety-inducing. #SchizoChat

Plus, these disorders are anxiety-inducing in general. I’m scared to be in public spaces, to talk to people, scared I’ll lose my job, that I’ll send an email to a professor that’s total gibberish. Anxious that people will…know. #SchizoChat

So, to recap! Schizo-type diseases can (and often) include psychosis (hallucinations and delusions), loss of function, and cognitive impairment. Schizoaffective disorder combines this with other symptoms of bipolar disorder. #SchizoChat

What causes schizo-type diseases? Good question! If I knew the answer I’d be getting a Nobel prize this week. #SchizoChat

There’s a genetic component—if your identical twin has schizo you are 30x more likely to also have it. But you may also be totally schizo-free. #SchizoChat

It likely is what we call “epigenetic,” some “phenotype” that results not just from genetics but also from the environment. In other words, it is the result of both nature AND nurture. #SchizoChat

And when I say “nurture” I don’t mean “how your parents raised you.” I mean the chemicals (such as hormones, foods, etc.) that you experienced during development, the impact of other organs’ function, etc. #SchizoChat

Some recent studies suggest that some schizophrenic symptoms in some folks are the result of gluten intolerance, of different bacteria in the gut, of a deficiency in nutrients like vitamins B and omega oils. These are all parts of your environment. #SchizoChat

Certain genes may make you more prone to having the illness if and only if you get these environmental cues. So some folks with the genes may never develop it, others may. And these symptoms may be the result of many causes all appearing in similar ways #SchizoChat

But, you ask, how do these things actually WORK? What is the mechanism in the brain? I study hormones and brains in animals, this question obsesses me. But again, we aren’t sure. #SchizoChat

In some patients, schizo-type diseases appear to result in or be the result of literal brain damage. You can see big holes in some schizophrenic patients’ brain MRIs. As you might imagine, this scares the shit out of me. #SchizoChat

But that is certainly not the case for everyone. These diseases likely impact signaling molecules in your brain—they could reduce the amount of these molecules (like serotonin) or impact the cells ability to respond to those molecules. #SchizoChat

Some tantalizing clues exist—many (>90%) of schizophrenic folks are heavy smokers. Why? Well, it could be because this is super stressful, but it may also give us a clue about what is happening in the brain. #SchizoChat

Nicotine is a signaling molecule just like serotonin. There are certain cells that receive it. These cells may be functioning incorrectly in schizo-type patients, and nicotine use could help restore some of their functioning. #SchizoChat

None of this is “proven” and there are likely different brain mechanisms for different patients. I just know that when I wear nicotine patches I reduce my psychosis and my concentration improves. So I do. #SchizoChat.

So how do you treat a disease we know so little about? Trial and error. Some folks respond really well to cognitive therapy. Some respond really well to anti-psychotic medications or other psychiatric drugs. I’ll talk about these more in a later #SchizoChat

Some folks can manage to function in society (can live alone, can have a job) without any help at all. Some may need to live in a permanent care facility even with extensive help. #SchizoChat

Some folks experience a progressive decline—their symptoms worsen as they age. Some experience a decline but it gets better, temporarily or permanently. Some stay about the same forever. Real grab bag, which is terrifying as a schizo-person. #SchizoChat

CW: suicide

I’ll discuss care/treatment/prognosis in later #SchizoChat sessions, but as you can imagine, the prognosis is not always very good. Patients may die very young, mostly from suicide, lung damage from smoking, neglect, and dangerous delusions ("I can fly!")

As you can imagine, a schizo-type diagnosis can be quite brutal. They most often manifest in the mid- to late-20s, when folks are starting their careers and their families. You can go from being “functional” to not in quite a short period of time. #SchizoChat

I’ve been SOOO depressed by the idea that my dreams are slipping away I’ve been nearly catatonic. I am trying to complete a PhD, I’m planning my wedding, I want to have kids… will my schizo allow me to do any of that? #SchizoChat

But the symptoms themselves aren’t the only threat to schizo-diagnosed folks. Another ABSOLUTELY HUGE weight is the stigma associated with schizo-type disorders. #EndTheStigma #SchizoChat

Google “most dangerous mental illnesses” or “worst mental illness.” There’s no such thing as a “worst” mental illness—major depressive disorder can impair you more than schizophrenia. It depends on an individual and their quality of life… #SchizoChat

…but inevitably schizo-type illnesses come up on these lists. You can’t get much more “crazy” than hearing voices and being unable to take care of yourself, after all. Schizophrenic folks often end up looking like bad stereotypes. #SchizoChat

Schizophrenic folks are often portrayed in the media in the most extreme and violent forms. The media isn’t covering “high-functioning” schizo folks (whatever that means)—they’re covering mass murderers #SchizoChat

I’ll talk more on both media portrayal and violence in later #SchizoChat's, but suffice it to say this all sucks. And when the US president is asking for a database of folks with severe mental illness it is downright terrifying.

This is a huge mental weight to carry. It cannot be overstated how hard both this stigma and the other symptoms of diagnoses can be on one’s well-being. But it also has other consequences. #SchizoChat

In my experience, the vast majority of psychiatrists, therapists, counselors, and psychologists are not trained to work with schizo-type folks. It has taken me months of phone calls to find any help at all, and I’m relatively “high-functioning”! #SchizoChat

University counseling centers give you names to call, and those people most often say that they “aren’t qualified” or that psychotic folks are “above their paygrade” (both things I’ve heard lately). Absolutely demoralizing. #SchizoChat

They often refer you to in-patient or out-patient clinics/institutions. Being institutionalized scares the shit out of me. I have a job to hold down! I can’t afford it—it would literally be thousands of dollars with insurance. I’m a grad student. #SchizoChat

I’ll #SchizoChat more about the cost of these disorders but let me tell you—between the specialists and the meds I’m already paying over half my salary to my schizo-disorder. One author estimated that it can cost $4 MILLION to be in and out of institutions. #SchizoChat

Plus, everyone acts afraid of you. I get it, most people don’t understand psychosis (I don’t, and I’m psychotic), but we aren’t all dangerous. The vast majority of us aren’t going to hurt you. But we can’t trust people to not know that. #SchizoChat

The end result is that we don’t talk about it openly for fear of losing our relationships, our jobs, etc. The cost of that is high—we are suffering alone (especially if we can’t get professional help or have support networks). #SchizoChat

The lack of visibility means that when folks are diagnosed they have few examples of people like them (who aren’t murderers on TV). I don’t know a single schizo-diagnosed or psychotic person in person. It sucks. #SchizoChat

So what do we do? We support efforts to promote positive portrayals of mental illness in media. We work with politicians to make sure services are available and affordable. We continue supporting research efforts. #SchizoChat

But most importantly (to me at least)—we need to be visible and loud. People don’t know us and don’t understand us. I want to make them know me. I want to get as many people to #SchizoChat and learn about these disorders as possible.

Eventually I will integrate this anonymous account with my professional science account (when I get the courage). But in the meantime the support I’ve found on Twitter has been an absolute lifesaver. #SchizoChat

So, I’m going to keep #SchizoChat-ting. I hope you’ve found this informative/helpful and will help me spread this as wide as possible. If you didn’t, well, let me know how to be more helpful. Give me more topics!

In the next few weeks I will talk about (in no particular order): the media, treatment, costs, public policy, helping schizo-diagnosed friends and family, dealing with a new diagnosis, finding help in the community, famous schizo-diagnosed people…#SchizoChat

…the history of schizophrenic diagnosis, different types of schizophrenia, schizophrenia in other cultures, a day in the life of a schizo-diagnosed person, popular books about schizo-type illnesses, etc. Let me know what else you want to see! #SchizoChat

If I can expand this beyond my current range of ten awesome people responding I will try to get folks to guest-host—I’ll ask other schizo-positive folks, doctors, and family members to curate the account for a week. #SchizoChat

Basically, I have no idea what I’m doing but I’m scared and furious and this is the only thing I can think of to do! That concludes my very long #SchizoChat—if you have any questions or want sources/more info please comment or DM me!

Hey @threadreaderapp can you unroll this for me please? Thanks!

@threadreaderapp Wow this is nightmarishly long. I guess I have a couple thoughts on this topic.

If reading it on Twitter is too disjointed/overwhelming or if you want to share the info off Twitter check out this link! threadreaderapp.com/thread/1182068…