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Comment by coleifer | Hacker News Reader

My youngest brother has schizophrenia, which started when he was 19. He just turned 31, and were it not for his family supporting and caring for him, I'm sure he would be homeless or worse. He's one of the most sensitive, gentle people I have ever known. My wife and others who have gotten to know him would agree.

Although he's "stable", thanks to an injection every 3 weeks, he's not going to ever get better. In fact he continues to retreat further and further away from the world and life. Why don't you go to the bowling group, movie night, job placement, etc, I used to ask him (events organized by a local psych facility for their patients, etc). Those people are crazy, he said.

It's a baffling disease. Besides his hallucinations and delusions, the defining feature seems to be that it resists treatment of any kind that would lead to what you and I would call a normal life.

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It might be he doesn't want to associate with people, groups, events that revolve around the diagnosis. Perhaps that labels him an "other" and it feels little much. Why not similar activities with the general population?

That is not meant to belittle the point that delusional people will strongly deny their symptoms, of course. Being close to somebody like that gets tough, especially when the delusions have led to harm to self or others -- even after they get treatment and it works, it's easy to become paranoid of relapse and fear that every small act of legit defiance or assertion of self is a recurrence of symptoms.

Downvoters, I am curious what the objection is. If I may elaborate on the second paragraph, the situation I am describing is one where someone is harming themselves or others, but saying everything is fine and refusing treatment. Then they get treatment, they improve for a while, and maybe you see some behavior that reminds you of that earlier episode, but they insist they're fine again. So you might ask: is this a relapse into delusion? Or are they really fine? Honestly it is tough to answer. When you have seen their condition hurting people and being kind of dangerous, it's easy to get scared of misjudging that situation.

> Why not similar activities with the general population?

This is something that has been recommended for many years. Rahter than day centres where mentally ill people can go, secluded away from the world, we should provide a wider range. Still have those day centres for the people who need it, but focus on helping people reintegrate with their local communities by using "mainstream" services.

Here's a pdf from 2006, but there are earlier examples. https://lx.iriss.org.uk/sites/default/files/resources/Redesi...

This type of belief is exactly what I was referring to when I said that one of the main features of his illness is that it resists anything that we would consider rehabilitating. Attitudes like this add to the sense of shame: "why don't you get out more and try to be normal like us. Everyone thinks it's a good idea for you." Makes me sick.

But it's also true. It's helpful for all people of varying states of mental health, whether you start out with a psychotic disorder or not. We all need and desire social support.

So it becomes this sort of jedi trick of encouraging those things without being pushy. I don't always know how to pull that off.

Ann doesn't want to join a creative writing group for mentally ill people, she wants to join a creative writing group.

Bob doesn't want a work-like scheme for mentally ill people, he wants to keep his current job and wants advice about disclosing mental illness to his employer and asking for reasonable adjustments.

These are the things that me and my friends have been campaigning for for all these years- a socially inclusive recovery model.

This. It's difficult to establish and maintain a sense of normalcy and social integration when you're only being offered a sort of tacit ghettoisation. Support groups can offer very useful support, but they can also become a trap of mutually-reinforcing pathology. Psychiatric inpatient units are a really difficult place to get better, precisely because you're surrounded by a lot of deeply troubled people who generally would rather be anywhere else.

The Camphill Movement offers an exemplary model of how people with learning difficulties can be integrated into a genuine community. What barriers are preventing us from offering similarly strong integration for people with severe and enduring mental illness? Why are so many people with moderately severe mental health problems being excluded from society for lack of relatively modest accommodations?

Extreme agoraphobia, social anxiety, very little to talk about... Most 31 year olds are working, raising children, etc., and don't live in their parents house. Don't underestimate the shame he feels when around others. Outside his family, I think it is overwhelming for him.

I think this is a very important point. He doesn't fit in and humans love to ask one another about their lives. If you give non-standard answers, then you're seen as weird or a failure in life.

> Those people are crazy, he said.

It is human nature to want to associate with people who display attributes you wish to see in yourself, and to avoid the converse. The aphorism "you are the average of your 5 closest friends" is based on that idea.

If your brother is self-aware of his illness and doesn't like its effects on him then his response is perfectly understandable to me.

That's not it. The biggest issue is that people who have this disorder can't interpret what other people are saying properly, like someone might be talking about taking a dog on a walk and the person thinks they are talking about how they are a dog. And being around other people who have the disorder makes it even worse because you have people that have delusional ideas and speech inspired by those ideas bouncing off other people that are interpreting that speech in a strange way. Which leads to an amplification of the perception of the disorder.

Thank you so much for sharing this. My fraternal twin has schizophrenia and was diagnosed at 23. We're 25. I don't have schizophrenia.

But his problem is that he refuses to take medication, so not sure where things will end up in the future with him. It's very up and down. One day like yesterday he's hearing voices and talking to himself, then the next day he's sort of normal.

Hearing that someone else also has a family member that is going through that is helpful.

Speaking from experience with my brother, it's an uphill battle. Without meds, he can go into a full-blown psychotic/manic episode and every new relapse damages the brain further and makes it harder to come back. With my brother it's especially bad since he doesn't even hear voices, but has delusions of grandeur and gets very confrontational, thinking he is the devil and wants to hurt people. Just recently (a few months ago) he had his third hospitalization, even though he was receiving abilify injections, and this time it took the strongest meds (haldol, leponex) to stabilize him. But sometimes it needs to get worse before it can get better. Try to convince him to take meds or get him on monthly depot injections. For reference, we are in our early thirties.

> Why don't you go to the bowling group, movie night, job placement, etc, I used to ask him. Those people are crazy, he said.

It might be tempting to read something like this and think "of course the crazy person thinks normal people are crazy". But I'd argue that "sane" people's reactions to mentally ill people are frequently more irrational and scary than the symptoms of the illness itself.

I should have clarified, those groups are organized by a local psych facility, and are for people with mental illness.

I have a brother who went through about a decade of off and on psychosis, had probably over 20 hospitalizations, multiple suicide attempts, he had schizophrenia. So I moved home and lived with him, I never fully believed the diagnosis. He was on such a cocktail of medicine, I don't think anyone could stay sane on all of that. We started getting him off the antipsychs, off the mood stabilizers, no wellbutrin etc. A year later he has had no psychotic episodes, no mania, is trying to quit smoking, and is more social. He still has his days in bed, but hes a real person, not a schizophrenic.

> hes a real person, not a schizophrenic.

Schizophrenics are real people first of all.

Congrats to your brother. I have heard it's possible for psychotic episodes to be a one-time thing and not recur. I have also seen people not get better. The whole thing is tough. It can be legit to get off the medications, but some people will need it for life. So how do you tell which situation you or a loved one is in?

Sorry, real person was harsh language, but in the depths of psychosis, it sometimes seems like the old person is no longer there.

I was just trying to emphasize that the diagnosis is never final, even after doctors have concluded it to be. In our case we never gave up. I think that the antipsychotic drugs make recovery extremely difficult, which is where alot of patients get trapped. The withdrawl symptoms themselves cause psychosis.

Just to tell another possible path schizophrenia can take. When my mother went off her meds she got significantly worse very quickly and would never quite recover to where she was before hand. But even while medicated she would still get worse each year. In her teens she scored a near perfect SAT(1560) but by the time she was 23 she was no longer able to hold down a job and by her early 30s she could barely string a sentence together that made any sense.

I absolutely absolutely know what you mean. With my twin that has schizophrenia, there are entire months where I'm convinced he's never coming back. That he's permanently gone this time. Then when I give up, there will be just one exclusive random day where he'll be a normal functioning person.

It sounds harsh, but when he's in that illness 'phase', the person seems more like a demon-possessed creature and not even like much of a person. When you hear the things and intonations that the person will say in conversations to themselves in particular.. that's what sounds the least person-like.

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