(This is heavily based off my class “Schizophrenia in the Scene”, on how to be an ally to alternative sexuality practitioners with schizophrenia. I’ve adapted it as a blog post for a more general audience.)
So: how to be an ally to people with schizophrenia, in several contexts, by a schizophrenic.
It can be hard to be an ally if you don’t know the basics. So let’s go over a few things.
First, let’s look at some of the most common types of psychotic disorders. We’ll go over some more specifics in a bit.
- Schizophrenia. Schizophrenia is probably what you think of when you think of psychosis. It’s the disorder I have. Symptoms include hallucinations, delusions, and negative symptoms. While the average onset is the late teens to early twenties for men and late twenties to early thirties for women, my symptoms officially appeared around the time I turned fifteen, and I was officially diagnosed at seventeen: early onset is possible, but it’s extremely uncommon to be diagnosed under age twelve or over age forty.
- Schizoaffective disorder. Schizoaffective disorder is a disorder with chronic symptoms of both schizophrenia and a mood disorder (either bipolar—with manic and depressive episodes—or depression).
- Delusional disorder. Delusional disorder (formerly known as paranoid disorder) is defined by the presence of delusion, though they don’t usually have as many behavior symptoms. While hallucinations may be present, they are always related to the delusions.
There are other types of psychotic disorders, and other disorders that can have features of psychosis. For example, schizophreniform disorder has all of the symptoms of schizophrenia, but only lasts one to six months.
Types of Schizophrenia
Within that first diagnosis—schizophrenia—there are several subtypes. Here are some of the most common.
- Paranoid. This is one you’ve probably heard of, and it’s the kind I have. It’s defined by unreasonable suspicion and paranoid delusions.
- Disorganized. Disorganized thoughts, speech, and behaviors. These symptoms tend to appear in all kinds of schizophrenia, but especially here. Thinking may feel complicated, and speech may come out as word salad, or gibberish. People with disorganized schizophrenia may have strange physical quirks or a lack of certain mannerisms at all, or mirror the person they’re with. Hallucinations and delusions tend to be less pronounced.
- Catatonic. This type is defined by catatonia—appearing to be in a frozen, statue like state (silent, still, staring, etc.) I’ve also experienced this episodically—primarily early on. Or, you may experience random hyperactivity (fidgeting, mirroring the person you’re with).
(Note: I’ve seen that the correct phrasing has technically changed from, say, paranoid schizophrenia to schizophrenia with paranoid features. So bear that in mind, but I’ll say I’m not super fond of that phrasing. As someone with a lot of catatonic symptoms at times, I used to say things like paranoid schizophrenia with catatonic features. So what now?)
I’ve mentioned many symptoms above, but let’s dive into what they really mean.
- Hallucinations. Hallucinations involve seeing, hearing, tasting, feeling, smelling, generally sensing something that isn’t there. While hearing voices is commonly referenced, hallucinations can involve all senses and also include object distortions (think Alice in Wonderland), and be more or less vivid. You may feel like you generally hear “background noise” or see a few extra shadows. You may or may not know you’re hallucinating. I experience all of this, and also have recurring hallucinations, such as one from my trauma (intersecting with PTSD), and a golden retriever puppy named Farrah. It’s a mixed bag.
- Delusions. A delusion is something you believe that isn’t true. You may believe that someone is out to get you (paranoid) or that you’re actually someone famous (grandiose). You may not believe it in full—just have it as an intrusive thought you can’t get rid of—or you may believe it entirely. I tend to have these episodically—usually triggered by a change I’m not expecting, like an object not being where I expect it to be, or vice versa—and generally be paranoid.
- Disorganized speech and behaviors. As mentioned, disorganized speech—word salad/gibberish that may sound coherent to the speaker, but not the listener (sometimes coming from disorganized thoughts) or going nonverbal—and disorganized behaviors (freezing, fidgeting, staring, flat affect/monotone, mirroring/parroting) can occur as part of psychosis. I experience these at times, especially when I get too tired. A lot of these also cross over with autism for me.
- Negative symptoms. Negative symptoms are a lack of usual functions. This can mean executive dysfunction—struggling with normal self care, jobs, study, and activities. This can also mean flat affect and social withdrawal. This can also mean a lack of ability to feel joy or interested in something. I also experience these, up and down.
So, if someone is experiencing psychosis—what now?
- Medication/antipsychotics. The front line treatment for psychosis is medication. You cannot truly treat psychosis with counseling or therapy alone. Medications designed to treat psychosis are called antipsychotics and come in many forms. With a psychiatrist’s supervision, you might try several before you find the med(s) and dosage(s) that work best for you, keeping an eye out for side effects. I take my antipsychotic med as a pill at night (it also helps with sleep). Other meds might be useful, and antipsychotics can also treat nonpsychotic disorders.
- Therapy. Therapy can still be useful to help cope with psychotic symptoms and any other issues or disorders. For meds and especially for therapy, the key is to get the right one. Get the right medication (or combo), and the right therapist. Not every therapist is someone qualified to treat schizophrenia, someone you’ll get along with, or even very good at all—some can actively make things worse. I’ve seen many. Make sure you find someone qualified who you like and you think really helps you. It’s not necessary, but it can be very valuable. I was in and out of therapy from 2012 to 2020. I’ve been out since, but have considered going back if I could, well, find the right therapist.
- Psychosocial approach. This is a therapy like approach that focuses on functioning in the world with psychosis, including family education and counseling, social skills training, occupational therapy, help with accommodations at school or work, and being as independent as possible (transportation, housing, etc.)
Now that we’ve covered some basics, let’s talk about how to interact with someone who experiences psychosis, whether they’re talking about the experience or struggling right now.
- First thing’s first: don’t assume you’d know if that person experiences psychosis. Don’t invalidate them by saying things like well, it’s clearly not that bad or no, you don’t. They would know better than you do. Also, stay away from lines like oh, I wouldn’t have guessed—it’s not necessarily your business, and that may or may not actually be a compliment; it can sometimes feel invalidating that it’s not apparent. Framing it as a compliment that it’s not apparent can also be a form of shaming the invisible symptoms. Also, don’t assume that the person is high functioning, not struggling, or even having a good day just because they’re having a nice interaction with you. You don’t know what they’re going through. I get this a lot as someone who passes as “high functioning” most of the time.
- Don’t treat it as extreme. Psychosis is often seen as the deep end of mental illness. While there are some valid reasons for it, don’t use this as an excuse to be othering. It doesn’t always feel great when someone says “you can even live a normal life with psychosis” or makes a comment to someone else like “at least you’re not psychotic”.
- Don’t stereotype. Not all people who experience psychosis experience it the same way, to the same extent, or are the same person, or feel the same way about it. Don’t lump everyone in together, and don’t throw things under the psychosis label that have nothing to do with psychosis, like certain political beliefs.
- It’s not a magic power. Please, do not tell people who experience psychosis that it’s a magic power, a religious calling, a spiritual experience, that they’re psychic, that they can see the future, the past, things you can’t, another lifetime, just—any of it. If it belongs in a house of worship or a science fiction/fantasy novel, just don’t say it. It can lead to an acute psychotic episode and fuel delusions and hallucinations. Whatever you believe, please keep it to yourself in this case.
- However, keep in mind that not everyone thinks their psychosis is all bad. I’ve written before on why I wouldn’t cure my own schizophrenia if I could, and view it as a crucial part of my creative work. Don’t force this as toxic positivity onto someone, but don’t necessarily go, “Oh, that must be so horrible, I’m so sorry,” either.
- Be aware of common psychosis triggers. As mentioned above, religion/spirituality/science fiction/fantasy kind of elements can be a big one. They also might be a special interest of that person’s—I love talking about those things at times—but tread carefully, ask first, and if they’re not up to it that day, they’re not up to it that day, even if it’s their favorite thing at other times. Other things: conspiracy theories, anything reminiscent of The Matrix or Inception, any “it was all a dream/simulation” etc., absurdist humor (“Cat? I don’t see a cat,” when there’s a cat right in front of you.) And if they ask you to stop, do it right away. Don’t continue on with the subject. Don’t try to explain it. Don’t apologize over and over; it puts the burden on them to keep interacting about this subject. Move on. It’s probably already a little late.
- Stay neutral on delusions. Don’t confirm them—they’re not true, and this makes them harder to shake. It also makes you a known bad source of information if that person comes out of the delusion later. Don’t deny them while the person is in them—this will just lead to frustration and confusion. Stay neutral. “I understand you think that.” I’ve had delusions that the person I was talking to didn’t exist/was a hallucination. I know it can be hard to stay neutral, but it’s always better to nod and smile and stall a little if need be than to take a side.
- Reality checks (and why they probably don’t work). Look, trying to reality check a hallucination is much more complex than you think it is. First, you’d have to check all five/more of your senses. Check every single thing affecting those senses in the environment, every object. Check if all of those things are oriented properly, the correct size, color, texture, distance—you get the idea. “You see the glass, too?” “Yes.” But it’s a completely different size to them. Flash of light? Well, maybe you just missed it—or maybe they’re hallucinating. “Can you touch it?” Well, yes, sometimes visual and tactile hallucinations do line up. This tends to be a powerful instinct for people—reality checking—but proceed with caution. One yes to, “You see X, too?” doesn’t mean the person is necessarily psychosis free. (Life hack: noise cancelling headphones = auditory hallucination check.)
- Say what you mean. On both sides. Remember that words mean different things to different people. For example, my wife and I discovered that when she said, “I’m tired,” she meant she had the vague urge to go lie down and rest. When I said, “I’m tired,” I meant that I was a few minutes at most from blacking out/was a fall risk/”Catch me.” That can be a pretty important distinction for a word people use all the time.
- Person-first language. Person first language (ex: a person with schizophrenia rather than a schizophrenic person or a schizophrenic) is commonly praised as a good default. And it is. But if it’s not that person’s preference, it’s not that person’s preference, and you should respect that, just as they/them are good default pronouns, but once someone tells you their preferred pronouns, you should use their preferred pronouns. And beware of clearly awkwardly rearranging a sentence around first person language, making it a bigger deal than it is. Think of this: if you wanted to say I was a writer, you’d probably just say, “Hannah’s a writer,” right? You wouldn’t clumsily tiptoe around Hannah is a person who writes, because it’s no big deal that being a writer is part of my identity. But psychosis probably trips your “I should use person-first language for this” button if you have one of those. But why? Are you deciding for me that it’s not part of my identity, or that it shouldn’t be something I identify with? Tread carefully here, and use the preference of the person in question.
Considerations for event planning and social groups.
- Be honest (about your scope). If you’re running anything that calls itself a support group, a safe space, a mental health/illness space, therapeutic, things like that: be very honest about what you can actually support. If you say you welcome all neurodivergent people, remember that it covers anyone who’s not neurotypical, not “anxiety, depression, autism, bipolar, ADHD, trauma”. If you’re not actually equipped to handle someone with psychosis—just be honest. It’s much better for me to read in advance that an event or group is not meant for me (in a non judgmental way) than to show up and get all of the mistakes from the section above, which are very common in groups that are just not prepared.
- Sensory overload. For people with psychosis and many other mental illnesses, sensory overload is a real thing at events. Consider adequate, non flashing, neutral lighting, a quiet space with limited background noise, a lack of strong scents, etc.—or at least a space at your event where someone overwhelmed by those things can catch a break or socialize more easily. In the case of psychosis, sensory overload can also start with sensory experiences that only that person is experiencing—what might not seem like a lot to you, could be the straw that broke the camel’s back.
- Physical safety. If there are steps, loose cords, things like that, in your event space, where your usual recommendation is watch your step, or things that require being very cognizant of your surroundings—see if there’s a way you can make that safer for those who might not be so easily in touch with reality. If I’m dissociating, I’m not watching my step. Or, objects may be distorted or hidden by hallucinations. Maybe a spare shelf can double as a ramp on a step or two down into a living room pit, or you can tape those wires down securely.
- Privacy. If someone reaches out to you about being a group member with psychosis, keep it confidential unless they explicitly tell you otherwise. Just because they’re telling you doesn’t mean they’re “out”. Be willing to talk about related concerns privately. At an event, places where guests could get a moment alone or with a trusted loved one are very welcome if someone needs a minute to calm down.
- Reach out. Ask what you can do to make your event more accessible—with the opportunity for private answers. Without being pushy, reach out to group members who have been quiet lately; maybe they just need a nudge or a reminder that they’re welcome.
Considerations for family, partners, close friends, etc.
- Advanced (mental) health directives/power of attorney. These are documents that (at least where I am; there may be different versions available where you live) outline the healthcare you would like to receive (or not) in advance, and who can make decisions for you if you cannot make them for yourself. Consider adding people you trust here.
- Emergency contact. Adding trusted loved ones as your emergency contact(s) at work/school/etc., and vice versa. Also, keeping a card in your wallet of your important medical information (medications, conditions, allergies, etc.) and emergency contacts (name, relation, phone number) can be a life saver. It has gotten me out of a bad situation where I was nonverbal or catatonic more than once.
- Subtle “help” cues. It might help to establish a way to cue them in to the fact that you’re having a problem, if they can’t generally tell/you can’t always communicate that with normal signs. It could be a subtle way to signal for help in public (or a visual in a loud room), a hand signal for if you’re nonverbal, so on—or different ones with different meanings.
I hope this information helps out a little.
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