Schizophrenia.com

My New Speech: What I’ve Learned As A Parent And Why Engagement Is The Key To Recovery

What’s the key to helping someone with a mental illness recover?

Is it robust community mental health services? Is it by forcing someone to take anti-psychotic medication? Is it housing? Jobs?

I’ve spent the past ten years traveling our country touring programs, examining services and talking to mental health experts, other parents, family members, and persons who have recovered. And I’ve come to believe that everything we do to help people recover is a temporary band-aid if the individual who is sick doesn’t want to get involved in their own recovery.

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Good read, I’d be interested in hearing his speech if it ever becomes available for free.

I would say that one of biggest issues with the system is that it basically encourages everyone to have Borderline Personality Disorder. I mean that sarcastically, but only to an extent.

Basically when you have more insight and are doing better, and are thus better able to try to seek out help for yourself, most professionals will regard you as though you are not “that bad” and like you are just trying to get drugs or attention.

But when you are doing so badly that you can’t even get help for yourself, well you don’t, because you can’t.

Thus the message is that in order to get taken seriously and given treatment, you have to put on a performance and seem “bad enough”. But then of course they will nail you for that, too.

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Do you live in the US? Just wondering. I don’t.

If you meant that for me, yes I live in the U.S.

Not sure if the system seems similar to others in different parts of the world.

I have just noticed that people who do drastic things like cutting themselves, ODing on drugs, going crazy in public, starving themselves, etc get taken seriously from square one. Which I don’t think is bad, of course.

But if you are able to show self-restraint, and you do, you basically get punished for it by not being taken as seriously. Which makes it seem like there is this message of, “You must prove how bad you are doing if you want anyone to believe you.”

So I am sure that this system has encouraged plenty of people to endanger themselves in an attempt to be taken seriously and given treatment.

Unfortunately I am far too inpatient and proud to play their BS games, so since I am almost always in control of myself, my issues have often been downplayed and/or totally misunderstood. Like I’m not going to cut myself up just to get taken seriously, especially the same system would likely turn around and attribute it to attention-seeking behavior anyway.

Like there is pretty much no-winning for most people until they are so bad they can’t function, and then they just have to hope to the powers that be that someone will get them help.

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The way I feel this is relevant to SZ in particular, is that even if someone with SZ does gain insight, good luck trying to explain to professionals that sometimes you’re out of your mind, but not right now. They will likely think you are just full of ****.

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Yeah I meant you. I think that’s a good point that you’re often overlooked if you seem like you’re in control. It shouldn’t be like that. There’s a lot going on beneath the surface and they should take into account. My current treatment team are not like that, but I have noticed the same tendency previously before I got the sz diagnosis and got transferred to this team. I don’t think it’s quite as bad here though. I live in Scandinavia.

In the UK if you’re a danger to yourself or others (In the case of psychosis exhibiting acute,positive symptoms) then you get a lot of attention. Especially if your behaviour upsets the public. If you are more chronically ill and having problems that affect you and not the public, and are functioning in a somewhat basic/substandard way then you are very much left to your own devices.
Help for those with chronic mental illnesses is very thin on the ground.

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Nice, your country is gorgeous.

And yeah it’s been one of my big griping points for a long time. My childhood conditioning has perhaps one silver lining, and it’s that I tend to be fairly remarkable when it comes to maintaining control no matter how much pressure and chaos I am under. When I do lose control, I have been pushed very far and very badly. I feel like it should be a strength that gets acknowledged and capitalized on when I am in treatment, but instead it means everything just gets heavily scrutinized and downplayed. And sometimes in bitterness I think that maybe I should give them what they seem to be asking for, but I don’t want to be that sort of person. My integrity means more to me than almost anything. But then I am not sure if that is just pride getting in my way instead of genuine integrity. I don’t know.

But what I see in that linked article is something that I see all the time in such materials. Lack of insight is such an assumed thing in psychotic disorders, that if someone were able to gain insight, they likely wouldn’t be believed, rather than professionals seeing it as something wonderful to be utilized while the window is open. So many loved ones seem to overlook this, or it just doesn’t occur to him. What does that man think would have happened if his son had gained early insight and went to professionals to tell them his story? Rather it is because his son lacked insight that people were so aggressive to help him. I am all for people trying to encourage engagement, but they should be aware of the new can of worms awaiting them.

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Yes it is the same here. All professionals have always asked me if I feel suicidal, and if I have thoughts of hurting others. I am always honest that while I get intrusive thoughts about suicide, I don’t actually want to die, and that I don’t want to hurt anyone, either. And the standard reaction is often along the lines of, “Okay then this is not a big deal.” So it’s like okay… Should I come back when I feel like killing myself or others? Because I probably won’t be back if that happens, you fools.

It sounds like integrity, not pride. But there’s nothing wrong with having a little pride, that can be a good thing if you don’t overdo it.

I agree. It’s just tricky at times.

A year or so ago my family physician wanted me to go a few cities over and check myself in the hospital’s emergency room. She said they had psychiatric nurses there who would help me, since I didn’t have insurance that would cover any sort of psych-type treatment.

I told her that would be pointless because I don’t seem crazy. I was fairly collected, could speak fairly well, and wasn’t an obvious danger to myself. She wanted me to go because my sleep was very poor and I was starting to experience psychosis symptoms.

My physician is a strategic, get-it-done sort of woman, so she advised me to just let myself act crazier than I was acting, to get the treatment I needed. But I refused and never went. Couldn’t do it, wouldn’t do it.

And I’ve always been that way. But looking back over the years, maybe I would have received better help much sooner and spared myself a lot of pain and loss, if I had just waltzed into an ER acting batshit crazy.

Even in my current therapy I make sure to let my therapist know how much insight have, and that while things seem and feel real to me, 99% of the time I know they are not, so I’m fairly safe in general. Instead of seeing that as good, she just seemed to try nitpick me apart and tried to trip me up several times. It’s just like oh joy, these hurdles.

Sorry your therapist isn’t more understanding and helpful… She should see it as a strength and try to help you use that strength to recover. But yeah I think what you’re describing is integrity. I wouldn’t pretend to be crazier than I am either.

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Well hopefully she does eventually. Minii plays a good devil’s advocate and makes some good points. I should keep seeing this therapist and give it a chance. But I just feel for people who do have insight and so try to be “engaged” and get themselves help. So many well-meaning loved ones like the guy who wrote that article about his son, seem to think that as soon as you have insight and become “engaged” that suddenly, magically professionals will be eager to take you seriously and help you. It often doesn’t go that way.

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Part of me wonders if maybe there are good intentions with it, even if misguided. Like if it is acknowledged that people can have insight while experiencing psychosis, does that open the door to people without insight being accused of pretending to lack insight? Like maybe by denying the possibility that people could have insight with psychosis, they are hoping to protect those who do lack insight from unfair judgement.

OMG I got this reaction from…my disability evaluator who was deciding my fate in regards to the right to have financial/medical disability services.

She laughed at me, stared at me mockingly from over her glasses, and called my doctor an idiot.

“Whoever told you you’re schizophrenic is an idiot,” she said and then laughed at me. I cried. It was ridiculous that I cried, but I did, right there in the room with her. She just smiled and shook her head, still smiling the whole time.

Damn normals can’t wrap their brains around functioning schizophrenics! It’s like, hello, it’s called medicine. Do you tell a diabetic who takes insulin that their current blood levels are okay (because of the insulin) and that you’re malingering or a hypochondriac.

I never did appeal that denial. I did fetch her name, though. I won’t post her name, but I have this plan to track her down in the AMA and file a formal complain about her lack of professionalism and her mockery.

No it was not. That was a mean thing to say, and her laughing and smiling was icing on the god damn cake. She was being a bitch. I completely understand your reaction.

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Damn sorry you went through that. I do think often it is something more psychological, as far as people’s reactions. Because I have never applied for disability, I just wound up homeless instead. I’ve never tried to get anything for ‘free’. And when I have seen psychiatrists, I’m not trying to get anything that makes anyone feel good, unless there is some sort of anti-depressant and AP recreational usage that I don’t know about. Frankly I think the meds suck, like a necessary evil sort of thing. So I don’t even think that in most cases like yours that it was about the disability.

To be frank, I think there is this prevailing notion that your suffering isn’t real unless other people can see it. If they can’t see it, then it’s not real. So if you don’t physically manifest your symptoms, then they don’t exist. In terms of psychosis, if you don’t seem extremely disoriented and out of touch, then it’s not really happening. I used to know a gal who had Anorexia Nervosa, and she would get upset when people accused anorectics of just wanting attention. I used to think to myself that there was nothing wrong with that, even if it was true in some cases. Is it so bad to want to get help for things that people can’t see, and would anyone have cared about what when on inside of her, if she didn’t weigh 80 pounds?

Maybe in part I am bitter over my family. Because when you can function 90% of the time, you won’t get help then. And during the 10% of the time you can’t, you won’t get help unless someone who knows you gets it for you. And if you don’t have that in your life, you’re ****ed.

But no, I don’t really believe that woman treated you that way because you were applying for disability. I have never applied, or asked for anything, and I am still regarded as though I am fine. And when I am not fine, there is nobody there.

Or in other words I believe she treated you that way, because some fallacy inside of her own mind.

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I did not feel good gaining 70 pounds on psychotropic meds. I was fine with my cannabis, in terms of altered states of consciousness, I don’t have fun on my meds at all, too many side effects including massive weight gain and tremors/twitches.

I applied for disability because I had such crappy lack of work history due to active psychosis through my 20’s. I also have such bad negative symptoms that I appear indifferent/apathetic/ yet also “nervous”, according to my most recent former employer, and get passed for continuing contracts…so i’m unemployed literally because of my disability, not because I wanna take psych meds and get stuff for free. I applied for disability on the advice of 2 pdocs, it wasn’t my own decision.

She didn’t notice that part about my inability to function for a good number of my 20’s, though. She might have mentioned something about “we get people who think they’re entitled” or something, but by that time I was sobbing and I can’t remember the details of what she said.

Punished for the illness, punished for recovery.

I understand. I was trying to add another perspective. See I was conditioned early on in life to be a pleaser, to try to get my needs met by not having any needs (which doesn’t make sense, but it did within the context of my extremely dysfunctional family). So I originally approached getting better with this mindset of like… if I make it clear that I don’t want anything good, I don’t want anything free, that there is nothing really in this for me except becoming more stable, then maybe they won’t hate me or think ill of me. But it didn’t work. It didn’t matter if I wasn’t asking for anything for free, or getting anything that feels good out of it. It was something on their own end, something that inherently bothered them, it seemed, about the notion that a person could be suffering but not show it very much.

So I just wanted to validate you in a way, by saying that based on my experiences and observations, it had nothing to do with you applying for disability, or being “entitled” or whatever. Many would have treated you the same way even if you asked for nothing but mental stability. It’s just the way people seem to be.

Where I was growing up and when, at the facility that I was at, child abuse was a taboo sort of thing. I don’t think I was psychotic then at age 15, at least not in a normal sort of way. But they still chose to conclude that everything must be because of depression, not because of my father’s out of control violence, lunacy and alcoholism. That wasn’t really a big deal, we just needed Jesus.

So it doesn’t matter what it is. Abuse. Psychosis. Whatever. Many people just have their own hang-ups.

Or so in other words, go for whatever you need in life, try to get whatever it is you need. Because the people who would deny you would deny you no matter what. So ■■■■ them, keep trying.

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