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Stigma
mikew (patient)
Thursday, October 18, 2012
 
Most of us who have a mental illness inevitably find ourselves in a situation where we are subjected to the stigma associated with mental illness in some way. The reality is that there are a lot of ignorant people out there. But if pressed, I'd say that their ignorance isn't their fault. Unfortunately, whenever some horrific news story comes out (such as the shooting at the midnight premiere of 'The Dark Knight Rises') the media reports that the person had some kind of mental illness. It seems like mental illness is only covered in the media when something bad happens. Because of this, a lot of people get a little scared when encountering someone with mental illness. Whenever we face situations like this, we have a few ways of handling it.

The first way we might be tempted to handle it is by getting all offended and angry and try to 'teach the person a lesson.' You can't teach someone a lesson by showing any signs of anger. If you do, you will only be perpetuating the stigma that people with mental illness are unpredictable, short tempered and potentially dangerous. Sometimes when someone says something ignorant about mental illness, all you can do is bite your tongue and do your best to not take it personally.

Still, there are ways to teach people lessons about mental illness without getting angry. The thing is, this can be a tricky situation. You need to be very careful about what you say and how you say it. You also need to be in a good place, mentally speaking. In other blogs, I talk about how I rushed back into my old social life too soon after getting released from the hospital. It is possible to rush into fighting the stigma of mental illness too soon, even if you have nothing but the best intentions.

A lot of us (myself included) feel like we have our illness under control and feel like we're walking, talking proof that people with mental illness aren't scary and can live normal lives. The thing is, you might not be as ready to tell people about your illness as you think you are. If you are going to tell people about your illness (in an effort to debunk the stigma that some people associate with mental illness--like how people with mental illness are dangerous) you need to seriously consider what you are going to say, how you are going to say it and who you are going to say it to. There are many ways to screw this situation up and make things worse. Here's five of them:

First off, you must never, ever come across as someone who is looking for sympathy. People can tell when someone is dealing with a lot of self-pity and fishing for sympathy with a 'woe is me attitude'. You will not be able to fight the stigma if you have insecurity issues. You need to be confident and in control of your mind and your life. Even if you're not looking for sympathy, it can still come across like you are. Everyone has issues and most people prefer that someone keeps their issues to themselves (aside from close friends and family members). The ultimate goal of fighting the stigma of mental illness is to get people to understand that people with mental illness are normal people... people you would never think have a mental illness. You always need to make sure you're being a great example of someone who has their illness in check and not coming across as someone who just wants to unload your baggage and get sympathy from others.

Secondly, if you've been fairly stable for a while but your illness is giving you a bad day and someone asks if you're Ok, that does not mean they are giving you an invitation to talk about your illness. Don't talk about your illness when you're having a bad day. You might think it justifies why you're having a bad day and that people will understand that, but they won't.

Third, sometimes you may say all the right things when opening up to someone about your mental illness for the first time, but the person might react by saying very little. What causes this situation is that, in an effort to show how far you fell and how far you've come since then, you revealed too much of what you were like when you were at rock bottom. Yes, it will be clear to the person that you've come a long way, but they could still be uncomfortable. These people have the best intentions, so don't get frustrated with them. What's happened is that the person is afraid--not of you, but of saying the wrong thing. The best thing you can do when you've opened up, thinking you said all the right things, only to be met with an awkward silence, is quit while you're ahead. Change the topic to something more positive as quick as you can. This will be reminding the person that you're still the same person they thought you were before you told them you have a mental illness.

Fourth, don't be too serious. If you are, the person may feel like they're being lectured to. So don't lecture people. Don't act like you're standing at a podium giving a deeply impassioned speech about how the world *must* change the way they view people with mental illness. Remember that you're not addressing the world--you're addressing an individual. Always keep in mind that you're fighting the stigma--not the person you're talking to. Yes, your objective is to get people to understand that people with mental illness are as normal and harmless as anybody. But your objective is not to *convince* someone that they need to stop treating mental illness as some kind of taboo topic no one should ever talk about.

Fifth, don't spend all your time on the darker, more depressing and frightening parts of your life when your illness was controlling you. The idea is to get people to understand that people with mental illness are normal and harmless. It's Ok to allude to the more depressing parts of your life, but listing all the depressing things that have happened because of your illness will hurt your case more than help it. Stay away from too much talk about depression. The reason people are uncomfortable when someone is talking about their depression is that most people, at one point or another, have felt depressed. Tell people what they don't know... such as what mania is like. If for some reason you absolutely must talk about your depression, keep it short and simple. Something like:

"the thing about the mental illness kind of depression is that you don't just hate everything about your life. You know all the great things you have in your life but still feel depressed... knowing you have all this stuff you're lucky to have but still finding yourself depressed makes you even more depressed because you should be happier. So it's not just about hating your life or that something bad happened." That's it. (for more on that, see my blog 'What Real Depression Is.')

This should go without saying, but I'll say it anyways--never bring up your illness during your first handful of dates with a new person. You may be proud of yourself for coming so far after being knocked down by your illness, but the person you're dating doesn't know what you used to be like and what you're like now. You are not going to impress the person you're dating--you're going to make him/her raise a lot of questions--but not out loud, rather in his/her head--questions you don't want people you're dating to be thinking about.

It's also important that you manage expectations. Don't expect anything from anybody. Don't expect them to be impressed, show sympathy, respect you more or give you special treatment in the future. Don't let your expectations make you talk on and on and on, waiting until the person you're talking to says what you expected them to.

So opening up to someone--in an effort to fight the stigma of mental illness--might not go as you thought it would. But you need to remember that everybody has problems, and a lot of times their problems might be bigger than yours. In fact, their problems might be so much bigger than yours but you never realize it because, in their minds, they're thinking you just need to deal with your issues because they're dealing with theirs but don't feel the need to tell everyone about them.

What you need to keep in mind is that, in general, people will never understand what having a mental illness is like, but they can learn to be understanding. But to be understood, you need to understand others as well. Always remember that no one is obligated to understand you. All you can do is understand yourself and always be striving to understand others. Understanding others means understanding the person you're talking to about your mental illness. When it comes to the first few times you bring up your illness in an effort to fight the stigma, don't bring it up to someone who doesn't know you all that well. Start with your family or best friends. The key here is that the people you tell already know a fair amount about you--it's important that the person you're talking to is comfortable around you and you are comfortable around them. If you're comfortable around them but they're not comfortable around you, you'll probably scare them away. The best thing you can do to fight the stigma of mental illness is to establish that you're a normal person who has his/her life together before you talk about your illness.. If you establish that, you'll come off looking pretty well because they'd have never guessed someone as normal as you would have a mental illness.

But what about the ignorant people you don't know all that well who say ignorant things about mental illness? Should you just let them say ignorant things that you find offensive? Honestly, yeah--you should. Let them say their piece and keep your thoughts to yourself. So you might be wondering, "how can I fight the stigma if I just let ignorant people continue to be ignorant? I thought this was about fighting the stigma? Doesn't fighting the stigma mean fighting mental illness ignorance?" Yes, it does. But the best way to deal with an ignorant person is to just continue to be yourself and don't let their ignorance phase you. Don't cut this person out of your life, and don't blame them for being ignorant because, odds are, they've never met someone with a mental illness so all they have to go on is the news and TV shows or movies. Once you spend more time with this person, and establish that you're a normal person who has his/her life together, you can bring up your illness and, suddenly, it's harder for the ignorant person to be ignorant because you don't fit the stereotype they have in their minds when they think of someone with a mental illness. Not fitting the ignorant stereotype is by far the best thing you can do to fight the stigma of mental illness especially when it comes to the ignorant people.

Ok--so those are ways fighting the stigma of mental illness can go wrong, but there are ways it can go right. The first and (in my experience) best way to open up about your illness is to use humor. Joke about your illness--that's what I do.

Now you may strongly disagree with what I'm about to say here, but hear me out. I'm talking from my experience and this is just me sharing the honest truth--I can't leave this out because it's worked so well for me over the years, but I understand if you don't think it will work for you:

Don't be afraid to throw around the word 'crazy.' I'm well aware that a lot of people who fight the stigma hate the word 'crazy,' and I get that--I just don't agree. The way I see it is that the word 'crazy' is accurate... more accurate than the ridiculous word for people with a mental illness: "consumers." Ugh. The point I'm making is that I did go crazy. If *I* use the word 'crazy', it takes away the negative connotations of the word. It makes people more comfortable because they know and I know that I actually did go crazy. That's what happened. I went crazy, and I'm not ashamed of that--and when I first bring it up to someone, they can tell I'm not ashamed of it. That breaks the ice. If I talked like I was ashamed and embarrassed, it would have resulted in an awkward situation every time. Every time I've brought up my illness (and I've brought it up to a lot of people) I've never found myself in an awkward situation. In my experience, saying 'mental illness' instead of 'crazy' actually makes the topic more serious than it needs to be and it may (as I mention above) make the person feel uncomfortable because they're feeling lectured to. The problem I have with 'consumers' is that it accomplishes nothing. If you use the word 'consumer' I can guarantee you that the first thing you're going to hear is "what's a consumer?" and now you're answering that question instead of talking about what you should be talking about--your illness with your own little twist on it. Feel free to disagree vehemently with me on this point, but I've talked to a lot of people about my illness and have used the word 'crazy' all the time--and it has *never* gotten me in trouble...

The vast majority of people you'll come across already know that a mental illness is a serious thing. If you casually bring it up in a more upbeat tone, whoever you're talking to will get the sense that you are handling your illness (or handling 'going crazy') and will feel more comfortable talking about the topic. This actually helps your ability to fight the stigma--if you bring it up like it's no big deal (even though they already know that mental illness is a serious thing) you are giving off the impression that people do handle their mental illness well and that they're not as weird (or dangerous) as the person you're talking to might have thought before. Fighting the stigma of mental illness doesn't mean getting people to understand that it's a serious thing. Anybody worth knowing knows that already. The best way to fight the stigma is to be a confident, well adjusted person who the person you're talking to will associate with mental illness in their minds. An ignorant person is ignorant because all he/she has to go on is a stereotype. Your goal should be to replace the stereotype they have in their mind with you--the normal person they would have never thought had a mental illness... the kind of person who shatters their pre-existing stereotype.

When I *casually* bring up my illness as if it's no big deal, people don't get uncomfortable because, right away, I establish that it's not this taboo subject that nobody should talk about or feel awkward talking about. People know mental illness a serious thing, so they don't need to be told how serious it is. In fact, my generation is much more informed about mental illness than older generations have been, and they really do want to know what being insane is like, but they won't ask if they sense that it's a touchy subject for you. If you bring up your illness by being so serious right away, people might interpret that as if it's a touchy subject. If that's the impression they get, they won't ask you questions. They'll be an awkward silence where they don't know what to say. So they may genuinely find it interesting and want to ask you about it, but if you seem too serious when you bring it up, they won't ask questions and you'll end up feeling like you weirded them out--even if they weren't weirded out at all and really wanted to hear all about it.

If you're too serious, you might come off as if you're lecturing or preaching. With me, when I just say things like "So yeah, I went crazy but I'm on medication so that's why I'm cool now." people grin or even laugh. When I first said that without thinking about it, I immediately realized how it may have sounded and quickly followed it up by saying something like "I don't mean my craziness makes me a cool person, I mean that I'm on medication so that's how I keep my cool," but they already knew that. Then one guy said "Actually, I do think being schizoaffective kind of does make you cool." So, if you handle these situations the right way--with an ability to laugh at yourself and downplay all the seriousness associated with mental illness--people will think you're a more interesting person.

In my last semester of college (as a creative writing major) I took a fiction writing workshop and passed off a part of my book as fiction. On the last day of class, I was smoking a cigarette outside during the break and talking with a guy from class. Since we were smokers, we'd talked a fair amount during the breaks in class all semester and he'd already told me that he liked my 'short story'. So on that last day, I figured I'd tell him that every word of my "short story" was true. Before he could say anything, I said, flat out, "yeah, I know--I actually was that crazy but I'm not that crazy anymore." After I said that, the guy's jaw dropped at first. After a few short seconds, he laughed and said "I knew there was this really interesting thing about your past that you haven't been telling anybody about." I responded to that by saying "Well I just told you," and he said "Yeah, you did. Thanks for that."

All that said, before you bring your illness up, remember to put in some serious thought when it comes to deciding who you're going to tell. Bring it up to people you've hung out with for a while--people who already accept you as a person... people who already have a good sense of who you are as a person so they don't define you by your illness. If you bring up your illness to someone you've just met, they might define you by your illness because they don't know much else about you--and that's the opposite of fighting the stigma... we aren't our illness, and we never want others to define us by our illnesses.

I'm at the place where I can look back on what I was like as a crazy person and laugh at how crazy I was. When I'm talking to someone about my illness for the first time, I'm not making sweeping generalizations in an attempt to speak for everyone who has ever had a mental illness. You might make the mistake of thinking that, in an effort to fight the stigma, you speak on behalf of everyone with a mental illness. That's not how to go about it. That would be like thinking you speak on behalf of everyone of your ethnicity. By trying to fight the stigma, you're actually perpetuating it by saying everyone with a mental illness is the same--you may not actually say that, but it can easily be implied and that's not what you want..

What can be really dangerous is if you're speaking on behalf of everyone with a mental illness (whether you realize it or not) and you're talking to a person who may actually have someone close to them that has a mental illness--but you don't know that. That can kill your credibility and potentially offend someone. I actually had something kind of like this happen to me, and I think it's pretty funny. In that fiction writing workshop class, I turned in the first part of my story (passed off as fiction). The next week, the class handed in their critiques of my story (again--completely true but passed off as fiction). When I got home, I read the critiques. One of them was from a girl who wrote "It's hard to write about mental illness unless you or someone close to you has one. Frankly, this is offensive, I think." This tells me two things. First, it is proof that nobody can speak on behalf of everyone with a mental illness, because a mental illness does different things to different people. Second, it proved that I'd never come off as someone who has a mental illness. I think the reason this girl found my story offensive was because the story (just like my book) was narrated in the voice of my delusional self--and the things my delusional mind came up with are funny because of how ludicrous they are... so she thought the story was joking about mental illness. I got a kick out of it when I told her it was true--once I said that, suddenly she loved the story and the second part I handed in later that semester.

So the key is not to make sweeping generalizations but rather use *details* specific to your experience--the things nobody else with a mental illness could have come up with.. The reason I can laugh about my illness and get others to laugh about it with me is because I get very specific about different delusions I used to have. Not only do I pick a specific delusion and talk about it, but I also explain where that delusion came from. I started brainstorming for my memoir about my year of total insanity about four or five years ago. As I let myself remember stuff, I learned that most of my delusions didn't just pop into my head--they came from somewhere. In my experience, people enjoy hearing about the irrational connections I drew and (I believe) people respond to that because it's the closest I can come to getting them to understand what it's like to have a mental illness. Believe me, lots of people do want to know what it's like, but they don't want to be *taught* about what it's like.

You'll know you're doing a good job at fighting the stigma if people keep asking follow up questions. If the person isn't saying much, don't ramble on and on, just try to wrap up the conversation and switch to a more positive, less serious subject. You'll also know that you've done a good job if people are genuinely surprised to learn that you have a mental illness. Not only does that mean you did a great job at talking about it, but it also is validation that you, indeed, do have yourself so together that people would have never guessed you had a mental illness in a million years. *That's* how you fight the stigma--carry yourself as a normal, confident person with high self esteem and when you do finally tell people about your illness, they'll get a lot out of it because you've already shown that you're a normal person. Ideally, you won't even need to say that "people with mental illness are normal and harmless" because *you* have shown that you're normal and harmless already.

Always keep in mind that it's very possible that the person you're talking to already knows someone with a mental illness. If they do, and they tell you, give them the opportunity to talk about that person and *listen closely*. Odds are, this person has never had the chance to open up and discuss the person close to them who has a mental illness. They may actually be struggling with a mental illness themselves but never get to talk about it, are ashamed, and have felt like it's something they have to keep to themselves... that's a lonely way to live... These people are making things too difficult on themselves--they need to find a support group, but right now, you could be the closest thing to a support group this person has ever had, so let them talk.. Never try to "story top" the person. Do not think you know exactly what the person is going through. Do not interrupt. Just listen, and if you feel like you can help the person in some way, bring it up once they get all their thoughts and feelings about the topic out--if you do that, you are doing far more than just fighting the stigma--you're helping someone who has probably never had anyone to ask for help on this touchy topic most people aren't that comfortable talking about.

When trying to fight the stigma, you need to know what you really want out of the conversation--do you want to A) fight the stigma because you want people to understand mental illness or B) do you want to fight the stigma because you're sick of people not understanding *you*? If your answer is A, great. If your answer is B, then you're probably not ready to fight the stigma and you'll probably have conversations you wish you never had. So if your answer is B, the best thing you can do is to find a support group. You'll be around people who understand what it's like to have a mental illness and you will never freak anyone out. Going to a support group before opening up to others about your illness is the best thing you can do for yourself, in my opinion. You can unload all your mental illness related baggage at group so you don't find yourself in a situation where people think you're desperate for attention, needy and are full of self-pity because you just can't keep your issues and baggage to yourself.

One final thought: be careful when it comes to facebook. My hope for this site is to make it a kind of little community like facebook except it's just for mental illness stuff. Don't make the mistake I made on Facebook. Since I barely ever use Facebook, one day I thought to myself "you know what? If someone actually cares enough about me to randomly look me up on facebook, I'll edit my bio and tell people what happened to me, because this person who was curious to see what I'm up to--out of the blue--must really care." This was about a year and a half ago, and I'd been stable for about five years and was doing very well. So I edited my bio and shortly thereafter I learned that when you update your bio, it tells *everyone*. I'd unintentionally told the world about what happened. I was embarrassed, but luckily most of the people I know and have as friends on facebook are spread all over the country. Just something to keep in mind.

Bottom line is this: before you tell people about your mental illness in an effort to fight the stigma, you must a) understand yourself, and b) understand your illness. At group one time, a lady who was in the early stages of recovering from her mental illness (bi-polar) was talking about how you have to "fight for what matters most to you" (I think she was talking about 'fighting for love' and not letting that 'special one get away' or something like that). I nodded and acknowledged that, "yes, that's true..." but then followed that up with "...but you can't fight for anything in life if you're still so busy fighting with yourself and fighting your illness." That kind of makes my whole point--you cannot fight the stigma of mental illness if you are still fighting yourself and your illness. Believe me, that will *never* work.

I just want to make one thing clear: I'm talking from my experience and from the experiences I've heard about from hundreds of people who have come to group. Some of what I've written here may work really well for you and other things might not. Use your own judgment, and if you're unsure about whether or not something I've written here will work for you, take a second and think about your personality. If in doubt, use the tactics that are consistent and mesh naturally with your own unique personality and ignore the tactics that don't.
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