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Would living "out" reduce MI stigma?


eldorado
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We often (justifiably) complain about the stigma associated with MI.  One of the most egregious and irritating type of stigma seems to come from the ignorance of individual people, everything from "schizophrenics must have multiple personalities" to people with depression should realized "just how good they've got it."  I don't think that there is a whole lot we can do to reduce media stigma, i.e. CNN's seeming editorial policy of looking for signs of MI in every person that attacks others (that's the just the carnival style "news" we seem doomed to live with, it seems they misrepresent anything to get a more salacious story).  But as far as individuals go, how are people suppose to understand MI in a personal way, unless we model it for them and are open to clearing up misconceptions.  Will some people be ignorant asses regardless? of course they will.  But unless someone has been around another who is trying to get their medications adjusted, how in the would could you possibly expect them to understand it? 

 

That last question is at the heart of the living "out" issue.  Exactly who is responsible for the "education" or "awareness" that it will take to clear up much of the ignorance that is the foundation of stigma?  If we want stigma to end, or at least reduce, isn't it unreasonable to expect others just to all of a sudden understand something they have no previous knowledge about and develop empathy for for people who suffer from a condition that they don't even know are in the room?  

 

Having MI can make a person vulnerable, especially socially and this can make being open difficult.  But at some point, unless the issue of MI is humanized for the general public, by them coming to understand that real people, as in people they know, are affected and how MI impacts those who have it and those surrounding them, they aren't going to see this as something affects "real" people. In addition, if their personal experience with individuals with MI is largely based upon, "it's none of your business, if you bring it up you are harassing me," understanding, let alone empathy, doesn't seem likely to happen.  

 

How do you think we should go forward?

 

 

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Some illnesses are easier to be "out" with than others. Trauma-based dx's also have to deal with the stigma around the trauma and the victim blaming/shaming. To take on being "out" without being whole or healed enough to also take on the trauma stigma would be irresponsible. To that we need group voices, rather than just individuals. Groups are louder and can speak for those who have yet to find their voices.

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I do presentations for NAMI to various audiences: schools, churches, meetings about my experience with mi.  The presentation is supposed to be positive. We start with our "Dark Days" and end with our successes.  I'm not very open to aquaintances, mostly my own self-stigma holds me back.  But, I do try to help reduce stigma.  I think the media is a huge influence.  A celebrity talking about their mi reaches many more people than I ever will, and people get a lot of their (mis)information from news, books, movies etc

Edited by confused
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When the topic of MI comes up in conversation, I speak out on any misinformation taking place, but that doesn't mean I have to disclose my own MI. It's an illness. For the most part, I don't think my medical conditions - physical or mental - are other people's business. I don't feel I have to disclose personal info to make a point. I can help influence others simply by being informed and speaking out at opportune times with others who are open to being influenced. 

 

That said, the stigma does make me feel like I am keeping a secret. But, that's a psychological thing for the most part. In general, I don't feel compelled to share my other medical conditions, so it's not likely I'd share that I have bipolar, either. In terms of disclosing in personal relationships, I stress some in a way that admittedly is different than disclosing my other conditions. I wish the stigma wasn't there. I just don't think I need to make my personal life public to help reduce the prejudices out there.

 

ETA: As someone said, when stars and public figures speak out, there is a bigger impact than if we do individually. I don't think that means we say nothing when there is prejudice in the air, just that I don't think we have to say we have an MI specifically.

 

I also want to say that I appreciate Glenn Close's organization that has put TV commercials out there on MI being something that affects nearly everybody. Can't say I love the commercials, but it is a real start in the right direction.

Edited by AnneMarie
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I do presentations for the Canadian Mental Health Association. I talk about my experience with mental illness to classrooms and groups of adults (I'll be speaking tomorrow, actually, in honour of Mental Illness Awareness Week).

 

I think being "out" is one factor in reducing stigma, but I don't think it's the only answer. Like Rosie said, some dx's are easier to be "out" about than others. And I like AnneMarie's suggestion of clearing up misinformation without necessarily disclosing. 

 

Somewhat controversial opinion ahead:

 

In my opinion, it is NOT mentally ill people's responsibility to educate the ignorant public about mental illness. That burden should never be placed on us. It is not our responsibility any more than it is People of Colour's responsibility to end racism. Ignorant people can easily find accurate information ALL ON THEIR OWN. They don't need us to hold their hands. If someone wants to know more about mental illness, they can easily seek out information from accurate sources such as books. It is simply not hard to find accurate information*. Even on the god forsaken internet. Just as it is White people's responsibility to check their racism, it is ignorant people's responsibility to check their stigma*. 

 

I hate when the privileged put this massive burden of education on us. WE DID NOT put this stigma on ourselves. It is not our mess to clean up.

 

Harumph.  

 

* I acknowledge that it is hard to find accurate information on some mental illnesses, BPD comes to mind. Misinformation and stigma abound. However, a quick browse of the Wiki page will usually give you (relatively) neutral information about mental illnesses. 

 

* I also acknowledge that some people lack the resources to educate themselves. The prevalence of stigma is a complex phenomenon.

 

I also realize that racism and stigma against mentally ill people are two entirely different things, I just wanted to draw a comparison to something people could understand. 

Edited by Parapluie
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Will being out reduce stigma? Yes, in some ways. Will it create new stigma? Yes, in some ways. Will everything eventually become flowers, sunshine and happiness? I don't think so.

 

Don't get me wrong -- I'm as out as one can be. Not only do I not have a choice to be out given how my illnesses tend to present, but I intentionally talk about them because I do believe that learning will make some things better. It shows people that there's a person behind the illness, and it removes some of the mystery and confusion - thereby reducing the fear-induced responses and glamorization. BUT, it doesn't stop people from putting you in a box - and I don't think it ever will. Mental illness is extremely complicated: you can have a room full of people with the same illness, and each experiences their illness differently. My manias, for example, take a very innocent path, but some suffer uncontrollable rage. My social anxiety is extremely obvious, you can't miss it, but that's not the case for all persons with social anxiety. People will associate how you respond to their experiences with another person's illness when the two are the same, and when you deviate they become confused - sometimes don't believe that you really have the illness, and their "support" is unhelpful as it's geared to often different symptoms and stressors than those you may be experiencing yourself.

 

I once had a person tell me that I'd be perfectly fine with Bipolar Disorder, perfectly functional and have a totally normal life, because their brother did. This person could not understand that while the illnesses have the same name, the illness affects every individual in different - sometimes obvious and sometimes not - ways. Was his brother a rapid cycler? How good was his brother's system at metabolizing medication? Did treatments often fail or prove ineffective? Any dual diagnoses? Do his manias or depressions present with psychotic features? He can see his brother is a person, he can treat others like people as a result, but he can only step outside the box his brain has built so much before giving in to the label he knows and saying something untrue and hurtful.

 

So, I tell my story, but for those who don't have personal experience with mental illness, hearing my story can result in them pegging any person with Bipolar Disorder as being just like me. So you think, "well, you just need to get across to them that they're all different..." except, our brains are made this way. Our brains are made to label things, put things into boxes for easy identification so the brain can do less work and respond faster. You can know that your brain is incorrectly stereotyping and override that stereotype with some thought, but that doesn't prevent your brain from saying "Schizophrenia is That Guy Talking To Jesus On The Corner!" and putting everyone with schizophrenia in that same box first. And in that minor blip is where most people make their judgments about you.

 

Who gets lung cancer? Quick, don't think about it just spit out your answer. Smokers? People around smokers? What about the people who don't smoke and aren't around smokers?

Who gets breast cancer? Women? What about the approximate 1% of men?

You can think about it and overwrite your answer, but in that flash moment when you aren't given an opportunity to think, your brain has already made its calculation and if given the opportunity to respond without thought the results are likely going to be inaccurate. And if we're honest, most people don't want to put in the effort to think about it and follow that snap judgment instead.

 

I'm not saying that "being out" is a bad thing. I believe reaching a place where we don't have to be so secretive is for the best, not because of the reduced stigma but because harbouring that secret can negatively affect your own health such as whether or not you're willing to get treatment, your stress levels, or cause guilt and shame. I'm out, I refuse to be anything but out, but that doesn't mean we should allow ourselves to believe that by being out it will erase all the stigma that comes with mental illness. Anyone thinking "yeah, I should do this! Erase stigma!" should be fully aware that it isn't going to solve all the stigma, it isn't going to prevent new stigmas from replacing old - people are still going to put you into boxes and you will be constantly working to get those people to remove you from that box. It might be worth it for you, it might not - think long and hard about whether or not it's something you want to put up with individually, and be realistic in your views of how people will respond and how you will deal with having to fight to push yourself out of strangers' boxes. If it's right for you, great! If it's not, that's okay too. Just keep realistic about what you/we/they're going to get from it and be prepared to constantly be responding to questions, and we can at least achieve some positive change.

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I've made an effort to be more "out" about my illness with people I know and trust.  I feel like I come off as a very stable person, so I feel like I might help reduce stigma.

 

But I don't tend to tell people I think will be assholes about it.  Which are probably the ones who need to know that a good number of people around them are indeed mentally ill.  

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We often (justifiably) complain about the stigma associated with MI.  One of the most egregious and irritating type of stigma seems to come from the ignorance of individual people, everything from "schizophrenics must have multiple personalities" to people with depression should realized "just how good they've got it."  I don't think that there is a whole lot we can do to reduce media stigma, i.e. CNN's seeming editorial policy of looking for signs of MI in every person that attacks others (that's the just the carnival style "news" we seem doomed to live with, it seems they misrepresent anything to get a more salacious story).  But as far as individuals go, how are people suppose to understand MI in a personal way, unless we model it for them and are open to clearing up misconceptions.  Will some people be ignorant asses regardless? of course they will.  But unless someone has been around another who is trying to get their medications adjusted, how in the would could you possibly expect them to understand it? 

 

That last question is at the heart of the living "out" issue.  Exactly who is responsible for the "education" or "awareness" that it will take to clear up much of the ignorance that is the foundation of stigma?  If we want stigma to end, or at least reduce, isn't it unreasonable to expect others just to all of a sudden understand something they have no previous knowledge about and develop empathy for for people who suffer from a condition that they don't even know are in the room?  

 

here's the thing: i don't think i'm necessarily a "good" paranoid schizophrenia example...not "one of the good ones", i mean, and i frankly would like to slap the faces off the faces of others who it feels like rub my nose in it that they are...or claim to be...or even believe that's a fucking thing and some are and some aren't. it's such a mixed bag. people can speak for one's own experience...but people often don't do that. they try to extrapolate from their experience to say what it's like...

 

just like what the media does, but backwards. they operate not from no experience to presume what an experience might be like...but from ONE experience to say what it's like (or could be or should be like) for us all who have x mental illness. and usually, the people who are standing up to be "counted" are pretty much your role model types who sound a lot like a nike commercial and overcame the single most severe case EVER by thisthattheother and in "sharing their struggle" basically step on those who aren't able to "just do it" in order to catapult themselves into some spotlight.

 

the best example of this isn't actually a schizophrenic...though there are a couple of people who do come close...the best example is someone like hallowell who capitalizes on being a face of adhd and he sells a fuck tonne of books doing so...or that jet blue guy who turns his frown upside down and makes millions...so why can't we all just capitalize on whatever?  the day someone with schizophrenia comes out and does that...i can only hope they have the fucking decency to not be like that. prolly not though, we're still human. mostly. probably : P or at least provide residential address so i know which house to egg ; )

 

i DO think that having a wider variety...not just the "success" and not just the "horror" stories...but a much, much, much wider range of stories being shared. if you look at treatment responsiveness, for example, about a third of those with my same diagnosis don't ever respond to any treatment and have functionality reduced beyond being able to "share"...about a third respond well enough to have a functioning life, for all intents and purposes...and then there's the third of us who are in between and have diminished functioning and some responsiveness but not total. i see documentaries about group I... articles by group II... group III... i don't see the "statistical percentage" i'm in diagnostically represented at all. and it might be due, in part, to not wanting to be viewed as either group I or III.... I is what is villified...II is what it seems like i *should* be able to be if i really tried hard enough... from my vantage point it's lose lose and that's why i really don't think i'm comfortable standing up in public and saying "yes, i have command hallucinations", for example. people assume i'm violent and or suicidal. and they ask questions that i don't have fluffy answers for.

 

i think being "out" in personal life... i am (at least generally), but not by choice...more by people having been party to my psychotic breaks and hearing about hospitalizations, etc. i think i would keep it hidden if i could. and if i had a time machine. but then the grass is always greener on the other side, yeah? prolly sucks to not have people know in its own right.

Edited by mellifluous
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Most people like to think that they are who they are because they somehow chose to be that person. This is bullshit but it influences how they view those who are different. If you're depressed then you just have to realise that it's all in your head, think of those less fortunate than yourself, try to look on the bright side. You did't choose this shit and you can't just choose to be otherwise and this is something that people don't understand.

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mell you make really good points.  I am totally "out" also, but if around a new person who has no clue and isn't asking the infamous question, " So, What do you do for a living?" question, I don't say anything.  I won't volunteer it unless there is an obvious opportunity.

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The thing is mental illness isn't all that uncommon and its generally spread evenly through the population.  Odds are decent that if you are in a fairly populated room, at least a couple of people there know or are related to someone with MI.  The stigma thing is a two way street.  A whole lot of people have gotten the message that its just something you don't talk about or bring up.  They may like to know more and I've found that many are genuinely curious, but they've been indoctrinated that its a taboo subject that they are not allowed to broach with a crazy person.  

 

NAMI and other groups who specialize in being loud take a whole lot of licence when they presume to speak on my behalf or else set themselves up as the faces as something as broad and diverse as MI.  Me, I'm just a single guy, one person.  Its hard to relate to a group that you aren't part of, but nothing humanizes something like speaking to someone who works next to you or is you neighbor.  

 

I'm not a cause, I'm a person.  If you want to know about me, leave the pamphlet for later, right now just get to know me like anyone else.

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  • 2 weeks later...

I don't see the point of the concept of being "out".  The people that need to know or are dealing with similar issues is one thing but walking in a march with signs and codependent, condescending coworkers seems like I am being exploited.

 

People that know I am bisexual always push going to those Pride Parades... to me, those are for gay people, so that irritates me and what is the point of being proud of something I have no control over.  But, I am not gay and those parades are really for gays and lesbians and the straight women that are overly invested in their lives and issues.  Sure, a few issues bisexuals deal with are close to their issues but we have a whole set of problems and stereotypes they don't and vice versa, and unlike them, we don't embrace our negative stereotypes while at the same time complaining about them.  We are looking to be valid and not looked at as half and half or confused or sluts or whatever.

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  • 3 weeks later...

Geese its really inspiring to see so many people here who are really helping in an organized way....i always wanted to do that. I wanted to dedicate my life to treating and speaking for eating disorders. I was really galvanized and accepted being "out". Ones mental state means a lot though, when you are ill its hard to keep yourself out or open. I wanted to help people but when I relapsed pictures of me spread on the internet and I was turned into a poster kid FOR not against anorexia. I still find pictures of myself online. People started gossiping. I got hate mail, called a loser, a shut in, worst of all I was called a hypocrite. Istopped wanting to be "out", I just wanted to hide.

Then I started having mi problems that weren't as accessible as anorexia and my weight got to emaciation and the stigma started. People were very mean when I was emaciated for some reason and everyone stared, I guess it forced me to be out the way having an episode in public forces you to be out, too. Istarted having paranoia, hallucinations, agoraphobia, violent outbursts...i couldnt be out about those things and I put a lot of effort into hiding it. I mean, my own self stigma reigned. reigns. Part of my staying indoors is because I'm scared of embarrassing myself in public or being found "out". I was able to be out about anorexia when I was in treatment. I didn't feel shame. I feel so much shame now.

I don't know how to go to work or make friends because I'm so scared of being "outed". I think people expect the best of others; people I know who have serious mi are frequently able to blend in and outsiders trend to minimize or assume the best of others. I know I present well, people like me, I just seem shy and quiet and thats fine. But when I have a bad day and have an episode and people see, they treat me differently. I have been called pathetic, people that knew me in high school but dont know my mi think I'm a loser. I don't think being out will change that. Won't make it any less awkward. Won't prevent some people from being scared off either. Personally I dont think I have the resiliency to face that inevitability right now so being out doesnt feel like an option. I wish it weren't so. Even my parents treat me differently now, how would a stranger be?

It would be nice to be o out or have a friend but it would not be nice to deal with inevitable sigma, not everyone is willing to learn or be open. Some people will think I'm unstable when they see my self injury scars, vapid and self absorbed when they find out about my eating disorder, a loser when they find out about the agoraphobia, or crazy when they find out I experience psychosis. Ive experienced it and it really hurts too much to be open or out. At least right now, maybe in the future. so I really hide instead. Better to remain enigmatic than be a pariah. I live in a very small town. I dont want to be out in a small town, it would become my identity. I would only tell someone close but I dont know I will be close to anyone until I have bern stable and symptom free for a while. when I meet people now I just lie. I hear people gossip about mi or about people they find weird and suspect have mi (i heard some people call their roommate an asshole ecause he didnt give eye contact or hang out and they thought he was autistic). I dont want to be gossipped about. People dont realize how hurtful they are.

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