Welcome to #SchizoChat, the biweekly forum where we discuss a question about life with schizo-type disorders. I’ll ask questions and drop fun facts about the topic in this thread. Today’s topic is caring with someone with a schizo-type disorder!
As usual, please ask me your questions. I’ve been super busy running an experiment so I’m behind typing these out but I’ll get back to you as soon as possible. #SchizoChat
We here at #SchizoChat respect everyone’s opinions—please be courtesy and remember that these topics are really personal for people. We all have different experiences and that is good!
I’m not an expert in any of this—I’m just a scientist (studying something totally unrelated) who happens to have schizoaffective disorder. Please let me know if I say something erroneous and I’ll fix it. It’s happened before and it’ll happen again. #SchizoChat
If you’ve missed any previous #SchizoChat you can check them out here in my pinned tweet. We address all sorts of topics, like the definition of schizo-type illnesses, treatment, the history of institutions, etc.:
Finally, I’m doing this to help inform folks about schizo-type illnesses, raise awareness in general, build a community for folks struggling along with me, and help #EndTheStigma. Please share! Let’s get everyone to #SchizoChat
Check this thread for updates approximately every five minutes for the next two hours! #SchizoChat
I have schizoaffective disorder, one in a whole group that includes classic schizophrenia, schizotype disorder, paranoid personality disorder, delusion disorder, etc. How common are these disorders? #SchizoChat
Approximately 1% of people worldwide have #schizophrenia. Fill a room with 100 people and one will, statistically, be schizophrenic. #SchizoChat
1% of people worldwide have #schizophrenia, and that’s not even counting people like me with other schizo-type disorders! It is common enough it is not classified as a rare disease. It is not that unusual to have a friend or family member with a schizo-type illness. #SchizoChat
Schizo-type illnesses are common enough that you probably know someone with one (whether you know it or not!). Remember, most of my colleagues and friends don’t know I have schizoaffective disorder. #SchizoChat
Despite the stigma, many of us know someone with a schizo-type illness! Do you? Let me know in this poll! #SchizoChat
There are many people with schizo-type illnesses. How do you help them deal with their illness? #SchizoChat
As usual I’m drawing a lot of my insight from Dr. E Fuller Torrey’s book Surviving Schizophrenia because he is an expert and I am not. He studies #schizophrenia professionally and is also the family member of a schizophrenic patient. #SchizoChat
Dr. Torrey begins the chapter “How can patients and families survive schizophrenia?” with a quote from Samuel B. Woodward. His take is, to say the least, a bit dark. #SchizoChat
“The wretchedness of those families upon whom devolve the care and maintenance of the insane can be estimated only by those who, from personal observation, have become acquainted with its extent. Their peace is interrupted, their cares are multiplied…” #SchizoChat
Samuel Woodward (1821) on folks dealing with “insane” family members: “The misery which they suffer is communicated to a large circle of friends and the whole neighborhood is indirectly disturbed by the malady of one.” #SchizoChat
Is it hard to help someone with a schizo-type illness? Does it lead to, as Woodward puts it, wretchedness and misery? #SchizoChat
It’s a bit frustrating to so often read accounts of the family member’s misery as they try to deal with a loved one with a mental illness. We get it, it isn’t easy for us either being on this end. #SchizoChat
So often information sources about schizo-type illnesses are written for caretakers (including Dr. Torrey's manual). It can feel shitty that there are few resources for patients themselves, like everyone believes we don't have the capacity to take care of ourselves. #SchizoChat
But of course family members can suffer if their mentally ill loved one is suffering. These illnesses can be compared to other chronic illnesses like cancer—they impact not only the patient but also impact family members emotionally, physically, and financially. #SchizoChat
Those family and friends helping someone with a mental illness also need to look after their own wellbeing (especially #MentalHealth). It’s much harder to help someone if you are also hurting! #SchizoChat
This means that family and friends of mentally ill individuals could also benefit from therapy and other ways to help #MentalHealth! Although in my opinion everyone could benefit from an effective therapist! #SchizoChat
Have you cared for someone with a severe mental illness? What were your experiences? What would you recommend other caretakers do? Let me know! #SchizoChat
What are some of the best ways to help the mentally ill, like schizo-type patients? Educate yourself! Learn more about the disease, treatment options, etc. Talk to doctors, talk to experts, talk to family support groups, talk to therapists. #SchizoChat
Dr. Torrey says that the biggest impediments to caring for those with #schizophrenia are blame and shame. This is an illness—it isn’t anyone’s fault and there is no more shame in having a schizo-type illness than any other illness. #SchizoChat
It’s easy to be ashamed of a patient who is in the supermarket, screaming at hallucinations (something I have done and presumably will do again). It’s okay—those feelings of shame are valid. But shaming a patient isn’t going to help anyone. #SchizoChat
Remember—it isn’t easy to be diagnosed with a mental illness. My diagnosis was downright terrifying. You’re allowed to be afraid to have an illness and the folks that care for you are allowed to be afraid too. But y’all still need to find ways to work through it #SchizoChat
Struggling with blaming folks for their mental illness? Feeling ashamed of a loved one with mental illness? Feeling afraid? These feelings are valid but aren’t going to help you or the ill individual. Luckily counseling/therapy/support groups can help! #SchizoChat
What will life be like for your loved one/friend with a schizo-type illness? If you haven’t checked our previous #SchizoChat “what is schizo?” you can check it out here:
Your #schizophrenic family member may be experiencing a range of symptoms. They’re likely experiencing psychosis, or the inability to perceive reality. Psychosis takes a few forms: hallucinations and delusions. #SchizoChat
When a patient is hallucinating, they are sensing something that is not real. They are seeing, hearing, smelling, tasting, or feeling things that are not there, or experiencing them differently than reality. #SchizoChat
Sometimes hallucinations come out of thin air. You’ll have a voice out of the blue. Other times they are perversions of reality. The sound of a fridge running may become a voice talking. A paper bag blowing in the wind may be a skeleton crawling. #SchizoChat
I experience hallucinations of all five senses. How do you help a patient experiencing hallucinations? #SchizoChat
Hallucinations can be absolutely terrifying. I hear shouting voices, see monsters jumping at me, see a beloved pet dead on the floor, smell smoke like a room is on fire, taste rotting flesh, feel something grabbing me. #SchizoChat
How do you help someone with scary hallucinations? Well, basically, how do you help someone who is afraid in general? Do your best to reassure them, help them feel safe, calm them down. I like being held although of course some people do not. #SchizoChat
What shouldn’t you do when someone is experiencing a scary hallucination? Don’t belittle their feelings. Sure, the hallucination is not real, but their brain is responding as if it was. Being chased by an imaginary monster still elicits the same adrenaline response. #SchizoChat
If your friend/loved one is scared of a hallucination, reassure them that they are safe but don’t discount their very real responses to the fear. We are still afraid whether the stimulus is real or not. Comfort us without being rude. #SchizoChat
Scary hallucinations can shake me for hours. I know they aren’t real but the physiological reaction means that I’ll often spend the rest of the day jumpy and on edge. It sucks. #SchizoChat
What do you do if your loved one can’t tell the difference between the hallucination and real life? I’m lucky that I can generally detect when something isn’t real, but not always. Sometimes I need to go up to touch visual hallucinations just in case. #SchizoChat
I’m constantly asking my fiancé if he can see what I’m seeing. Is there a man over there? Can you see that deer on the road? He’s a case study in effectively caring for a schizo patient—he always calmly reassures me that everything's okay without making me feel judged #SchizoChat
My dog is also great with that. If something was running at me I’m confident my dog would respond. If the room was actually filling with smoke my dog would let me know. I really wish I could bring my dog to work as a service animal, but my lab's too dangerous for dogs #SchizoChat
How do you help a hallucinating patient that doesn’t know they are ill? Remember, 50% of schizo patients legitimately believe nothing is wrong with them. This isn’t some failure on their part, it is a result of the illness itself. #SchizoChat
Keep hallucinating patients from real danger. It’s surprisingly easy to be hurt by “fake” hallucinations. They are scary and scared people can act irrationally. I see animals standing in the road a lot—I could easily hurt myself or others if I swerve my car. #SchizoChat
If your loved one does not believe they are ill helping them with hallucinations is tricky. Get them help for their illness in general (therapy, medication, etc.), help them see a professional who is trained to introduce them to the illness. #SchizoChat
Even if the patient doesn’t believe they are hallucinating you can still do the same things to help them. Gently reassure them that they are safe. Hold them, comfort them, do your best to keep them from danger. Don’t mock or belittle their really real fear. #SchizoChat
Scary hallucinations=not real. Response to scary hallucination= super real. #SchizoChat
Of course not all hallucinations are scary. Many are benign or even enjoyable. I’m comforted by visions of dead loved ones, the sound of imaginary soothing music, a soft, gently reassuring voice, the feel of a warm hug. #SchizoChat
It’s hard sometimes to want to get rid of these hallucinations. I have waaaaay fewer when I’m correctly taking my antipsychotic medications. Fewer bad hallucinations is great. Fewer good hallucinations is not. I get lonely without them. #SchizoChat
Missing the psychosis is one of the many many reasons schizo-type patients will often fail to take their meds. Definitely a minor one—more often it is because the meds don’t work, hurt us as much as help us, are too expensive, are hard to remember to take, etc. #SchizoChat
I’ll discuss problems with meds later in this #SchizoChat
Hallucinations can be good, bad, and neutral. In any case, remember that these experiences are very often totally “real” to patients. Don’t belittle them for how hallucinations make them feel. Happy to see a dead family member, scared to see monsters? Don’t be mean. #SchizoChat
It can be frustrating when your loved one is constantly talking about the crazy shit they hallucinate, I get it. My world is often a fantastical place filled with all sorts of things beyond reality and I tell my loved ones about it. It happens, be nice. #SchizoChat
As with everything else, my partner is great at this. He often responds with a non-sarcastic “that’s lovely” or “there is nothing there, come here and let me hold you.” Other times he asks me questions like “what are they wearing?” or “how does the music sound?” #SchizoChat
Have you cared for someone with hallucinations? Do you have any tips? Let me know! #SchizoChat
Have you yourself experienced hallucinations? What would be helpful for you?
In addition to or instead of hallucinations psychotic patients may experience delusions. They believe in something that is not real, or perhaps better put: they KNOW something that isn’t real. #SchizoChat
Delusions aren’t something that can be easily reasoned away with evidence. I KNOW the books on my bookshelf have eyes and are watching my every move. All the evidence in the world (of which there is plenty) cannot convince me otherwise. #SchizoChat
Like hallucinations, delusions can be good and bad. Many of the classic examples of delusions are decidedly bad. Patients know they are being watched by the FBI, they know they have a microchip somewhere in their body, etc. #SchizoChat
Caring for someone with these scary delusions can be incredibly frustrating and scary. You can show every possible piece of evidence and nothing will change their mind. Get professional help—many psychologists are trained to help such patients. #SchizoChat
Like hallucinations, though, not all delusions are bad. I consider myself an objective scientist, but on the other hand I KNOW that there is some force watching over me. Sending me little signs in the media I consume, in the little things that happen to me every day #SchizoChat
You may call it faith I guess, but I don’t really have any other spirituality otherwise. But something tells me to do things. It comforts me, it guides my decisions in small and usually harmless ways. #SchizoChat
Sometimes the decisions aren’t so small--- I was told that I had to go to this particular university and adopt this individual dog. Both worked out great—I love my job and my dog’s the best. I’m lucky I wasn’t misguided. #SchizoChat
How do you care for someone that believes they’re getting messages from God? Obviously it’s a bit tricky—is it faith or a delusion? Is there a difference for that patient? #SchizoChat
In general my partner’s response (which has worked well for me) depends on my response to the messages I receive. Do I feel warm and happy? Then he’s inclined to be happy for me. He isn’t religious/spiritual but he accepts that it’s real for me. #SchizoChat
Other times the messages from God get too big or absurd or unusual and my partner generally gently asks me to walk through potential consequences. He never belittles me but he will sometimes say “sorry about asking, but do you think this is your delusions talking?” #SchizoChat
Asking someone if they are having a delusion is obviously not always going to work--- it sometimes makes me feel like I am being talked down to or minimized. But other times it gives me enough pause to make a better decision. It’s a crap shoot—good luck! Lol #SchizoChat
But luckily most of the time my delusions are things like absolutely *knowing* there are worms in my eyes. Easy for my partner to gently present evidence and hold me super tight until the worms go away and we can laugh about it. #SchizoChat
Psychosis (hallucinations and delusions) are not the only symptom of schizo-type illnesses. How do you help patients deal with the other symptoms? #SchizoChat
Remember, patients may have a hard time performing basic tasks, may be depressed, may be over-sensitive to stimuli, may be experiencing negative health consequences of their medications, etc. For more info on the other bits check out this #SchizoChat:
I deal with this—there are days and even months when I can’t get myself to shower, can’t keep my space clean, can’t get to work. It is beyond frustrating from my perspective and I imagine even worse for the people who love me/have to work with me. #SchizoChat
Shaming a patient with this executive dysfunction does not work. Trust me, I am already beyond ashamed that I can’t get off the couch and go to work. I feel lazy and awful. Making me feel worse will only make me more depressed. #SchizoChat
If your loved ones are experiencing executive dysfunction be compassionate. Help them out where you can without making them feel any more ashamed. If you can’t do it, look into housing facilities, assisted communities, cleaning services, etc. #SchizoChat
Are you experiencing executive dysfunction? Be compassionate with yourself! #SchizoChat
There are certainly things that you can do to help people stay on track. Like all people, folks with schizo-type diseases often do the best if they have predictable schedules. Keep set meal times, bedtimes, etc. #SchizoChat
My short term memory has worsened as my illness has developed. It helps if I keep my schedule written out so I can check off the things that I have done and remember what I have to do. There is no shame in sticker charts! Adults like stickers too. #SchizoChat
By sticker charts I mean a chart where every time I brush my teeth I get to put a sticker for that day. If I can’t remember if I have or not I can check the chart. Sticker not a good enough reward? Go with chocolate or something. #SchizoChat
This is especially important for medications! Medications are one of the best treatments for schizo-type disorders—staying on track can be the difference between living well and relapsing for many patients. #SchizoChat
I keep a pill container and have reminders set for the half a dozen medications I need per day. Taking them at a set time is super important—just last week an experiment ran over, I took my pill late, and I ended up being too ill to go to class the next day. #SchizoChat
How can you help a patient stay on track with medications? Gentle reminders can help, or facilitating some sort of system. Build a reward system. Whatever it takes. #SchizoChat
What if the patient refuses to take the medication? We talked about this in our #SchizoChat about consent. It can be a depressingly fuzzy gray area:
In general, talk to professional help rather than consulting a twitter thread by some ill PhD student. But I’d say think critically about why the patient is resisting meds and the possible response. #SchizoChat
Are patients resisting medication because of nasty side effects? Work with a psychiatrist to find a new care system. Are they resisting because they don’t believe they are ill? Work with a psychologist. #SchizoChat
How bad will life be without the meds? For me, my psychosis markedly increases without meds but I’m pretty good at dealing with the crazy shit. There are times the side effects have been so bad that my psychiatrist and I agreed I was better without meds. #SchizoChat
There have also been times where I was too ill to be off of meds. Even when I wasn’t on medications I met with my psychiatrist regularly just to be sure—when I started getting bad we started the meds back up. #SchizoChat
Not all patients can do this on their own—I am one of the lucky ones. You may need to guide patients, convincing them to get help. It isn’t easy for anyone involved, and as we mentioned the consent issue gets really depressing really quickly. #SchizoChat
As my therapist (who is trained to help schizo-type patients) is constantly telling me “you need to sleep more!” Sleep is super important for all people, but especially for schizo-type patients on these hard-hitting meds. Lots of sleep at consistent times! #SchizoChat
As you might imagine, I am super bad at getting sleep. I get a lot of sleep but I also run experiments over overnight on some nights and take classes during the day. Life as a grad student is complicated. Life as a mentally ill graduate student is too! #SchizoChat #GradChat
Sleeping is hard when you are hallucinating and hearing voices. And sometimes when I find a little peace in my head I want to hang out there as long as possible so I’m unwilling to give it up to go to bed. Encourage your loved one to sleep but be gentle. #SchizoChat
In general, be gentle when caring for a mentally ill individual. Most of us are adults capable of making our own decisions, and family members and caretakers need to come to peace with that. Adults can make bad decisions at times, we can too. #SchizoChat
My partner says that my tweet about executive dysfunction that should be between this tweet and the next has disappeared. Here it is:
Remember, patients may have a hard time performing basic tasks, may be depressed, may be over-sensitive to stimuli, may be experiencing negative health consequences of their medications, etc.
My partner says the tweet that preceded this is gone on his thread. Here it is: Remember, patients may have a hard time performing basic tasks, may be depressed, may be over-sensitive to stimuli, may be experiencing negative health consequences of their medications, etc.
Schizophrenic symptoms can be triggered by stress and other stimuli. Like all people, schizo-type patients need to find ways to identify and deal with stressors. #SchizoChat
I find it really useful to chart my experiences. What food was I eating, how much sleep did I get, when did I take my meds, how much caffeine did I get when I experienced bad psychosis? That way I start to pick up patterns. #SchizoChat
Learning about your triggers/stressors is important! If you know that your family/friends can help you avoid stressors, let them know about it! If your mentally ill loved one asks you to stop doing something because it triggers them, be compassionate! #SchizoChat
Schizo-type patients can be easily overstimulated and overwhelmed. Lights are often too bright for me, temperature fluctuations are too dramatic, noises are too loud, things that move quickly are too much to handle. #SchizoChat
In some cases this only happens occasionally. I’ll get super overwhelmed by background noises that other times I wouldn’t even notice. Sometimes lights are so bright I won’t be able to read. #SchizoChat
Being overstimulated is at best irritating. At worst it can mean crushing headaches, an inability to focus (or do anything at all), and debilitating panic attacks. #SchizoChat
Help patients avoid the overstimulation if possible. Move away from a particular area. Turn the damn music down if they ask. Find them a quiet dark cozy place and lead them through calming breathing exercises #SchizoChat
There are many fun gadgets you can buy to help overstimulation. You can install light dimmer switches. Buy heating/cooling pads, noise-cancelling headphones, earplugs, fidget devices, whatever it takes. #SchizoChat
I own fancy pink migraine glasses that I wear to block wavelengths inside. I try to never leave the house without sunglasses—they’re constantly on my head, just in case. I have a pair of night-driving sunglasses so I’m not overwhelmed at night. #SchizoChat
If you don’t already you should check out any of the amazing #ActuallyAutistic folks on Twitter who share awesome tips about avoiding overstimulation. If I had my shit together I’d tag some folks I find helpful but I’m so behind typing this week (so please tag folks!) #SchizoChat
Avoiding triggers is important, but remember that life happens. I know that I don’t do well with little sleep but there are times I don’t get to bed early, or can’t. Don’t blame patients for their psychosis when they’ve accidentally triggered an episode! #SchizoChat
Remember, stressors/triggers can initiate psychosis and other bad reactions only occasionally. I constantly get “oh I thought this was bad for you but you’re fine now, it must be fine if I do this then.” DON’T DO THAT. #SchizoChat
Other times I experience schizophrenic symptoms without any triggers at all---it is just my brain. It happens. #SchizoChat
Everyone has bad habits, but some are particularly common for schizo-type folks. For instance, an estimated 90% of schizophrenic patients are heavy smokers #SchizoChat
Why do schizophrenic people smoke? Depends on the person of course, but there is some evidence that nicotine may help alleviate some of the symptoms of schizophrenia: #SchizoChat
medicalnewstoday.com/articles/31544…
medicalnewstoday.com/articles/31544…
Of course smoking constantly is also super bad for you—smoking-related illness is one of the many reasons schizophrenic patients have consistently shorter lifespans than non-schizophrenic patients. #SchizoChat
Be compassionate when addressing bad habits in general. Gently remind patients of the consequences while also acknowledging that they are (generally) adults who are allowed to make their own bad decisions. #SchizoChat
I used to inhale absurd amounts of nicotine with a vape pen (like, 3-4 packs of cigarette’s worth a day). Now I am on nicotine patches and chew way too much nicotine gum. I know it’s not healthy but my symptoms are unmanageable otherwise so…. #SchizoChat
What should you NOT do if you have a friend/family member with schizophrenia or other schizotype illnesses? #SchizoChat
Don’t tell us our psychosis is all in our head. OF COURSE it is. That is the damn point. It doesn’t make the feelings the psychosis elicits any less real. #SchizoChat
Don’t try to convince us we aren’t ill or ask for evidence. This happens a lot to “high-performing” schizo patients. I can’t show you what goes on in my head! But I’ve been diagnosed by 5+ independent professionals at this point sooooo. #SchizoChat
I know it is hard for family members to accept—a schizo-type illness is a big deal. But arguing that the professionals are wrong isn’t helpful to the patient. Especially the 50% of patients who don’t think they are ill! #SchizoChat
I’m SO TIRED of being asked to “prove” that I’m psychotic. How would that even work?
#subtweet @ my parents
#SchizoChat
#subtweet @ my parents
#SchizoChat
What other obnoxious things do schizo-type patients experience? I’m soliciting responses here: #SchizoChat
So I’ve talked a lot about what to do to help schizo-type patients as a friend/family member. Be patient, be kind, be compassionate. Be knowledgeable about symptoms and treatment options. Buy a damn light dimmer. #SchizoChat
That concludes our #SchizoChat for today. Next week's chat will be weird because I'm traveling for the holidays-- instead of being on Wednesday it'll be the same time (7-9PM EST) but on Thursday evening.
The topic for next week's #SchizoChat will be "So, you've been diagnosed with #schizophrenia, now what?"
If you found any of this helpful please let me know and please share! Let's #EndTheStigma
#SchizoChat
#SchizoChat
Hey @threadreaderapp can you unroll this thread please?
@threadreaderapp Here's the html version if you want to share: threadreaderapp.com/thread/1204914…
