My Experience Only. YMMV.

Posts tagged ‘public perception’

Why Do I Write About Mental Illness?

I have bipolar disorder. But that by itself isn’t the answer. Here’s why I write about mental illness and mental health.

It’s what I do. I’m a writer. It’s what I would be, bipolar disorder or not. I’ve been writing since I was a kid, and writing and editing professionally for decades. But that isn’t the whole answer either.

It’s what I have to do. I have plenty of topics to write about besides mental illness. Over the years I have written poetry; a few children’s stories; and articles about martial arts, religion, cats, education and teachers, technology, architecture, and other subjects. In addition to this blog, I have another – janetcobur.wordpress.com – in which I write about whatever crosses my mind or my path – books, news, humor, and the things that made me name my blog Et Cetera, etc.

But this blog is the one that I have to write. It started as journaling but quickly – in a matter of weeks – became more.

It’s what I am. Mentally ill, that is. A life-long acquaintance with – or rather, experience of – a mental illness makes the subject one that goes to the bone. I can’t call up a memory from my childhood that doesn’t involve desperation, sobbing, and disaffection, or fragile, giggling glee at things no one else noticed or cared about. My college years were marred by distress, anxiety, and apathy. My adulthood has been marked by breakdowns, immobility, and psychotropics. I can’t get away from the subject, even if I try.

I have the skills for it. I have read a lot about mental illness and bipolar disorder, in self-help books, more scholarly works, memoirs, and even fiction (http://wp.me/p4e9Hv-nE). I have an academic background and an intelligent layperson’s knowledge of science and psychology. I can share that perspective with others.

It helps me and others understand. Examining aspects of bipolar disorder necessitates that I learn more about it – and therefore about myself. Planning, writing, and editing posts help me clarify my thinking about this illness I live with every day. Sometimes I am just too close to it until I step back and look at it from a different or even new perspective. That’s one of the benefits for me.

The feedback I get – comments from readers and other bloggers – leads me to believe that what I write has value for them too.

It needs to be talked about. The general public – society at large – doesn’t understand mental illness. There are widespread jokes, misunderstandings, and inaccurate media portrayals. Above all, there is discrimination – in jobs, housing, medical treatment, the legal system, and more. There is more trash talked about mental illness and psychotropics every time there is a mass shooting incident or a domestic terrorist bombing.

One of the solutions to these problems is education. Most of the writing I’ve done in my life has been on (or near) the subject of education. I consider myself an advocate for education. And now I am an advocate for education about mental illness. That education should start in public and private school health or social sciences classes. It should continue in adulthood for those who never learned it in school.

Celebrities like Glenn Close and Richard Dreyfuss have big names and big audiences and a vital message to spread about mental illness. I don’t have the big name or the big audience, but I do what I can.

Because the people, including me, who live with bipolar disorder and other mental illnesses every day, need messages of hope and sympathy and experience and activism and explanation and thought and outrage and kindness.

And that’s why I write about mental illness.

 

 

 

 

When You Think Other People Are Talking About You

You know when you feel sure that other people are talking about you? You notice them whispering, or looking at you, or studiously not looking at you, and you think, what are they saying about me?

Two smiling friends sharing secret in coffee talkPsychologists call those feelings “ideas of reference.” (If you alter your behavior because of the supposed scrutiny, they’re known as “delusions of reference.”) Ideas of reference are often associated with paranoia. However, if you ask clinically depressed or bipolar people, you will find that many of them have them as well.

I know I have. It’s hard not to. You already feel that you’re not really normal (whatever that means) and you’re afraid that it shows. If people can see that you’re not like everyone else, they’re bound to be talking about it. Never mind that your difference is a mental one; you’re sure that everyone can tell just by looking at you that you’re crazy.

In actual fact, the people you think are talking about you usually aren’t – until you go over to them and defensively berate them or accuse them of doing so. Then you can be sure they will be talking about you after you leave.

Except perhaps in junior high school, most people in everyday life do not spend their time discussing how odd the people around them are. (Except for those people who take pictures of others at Walmart and then post them on the internet.) But the average person is too involved in his or her own daily life to give more than a passing glance to a stranger. The people you see whispering behind their hands are most likely developing their own secrets or gossiping about someone you don’t even know.

Even if the people are talking about you, ask yourself – so what? Do their opinions really matter? I know that you want to say yes, they do. But in the larger scheme of things, they don’t. Your life will not change in the slightest if they are saying they don’t like your haircut or that they heard you bite your nails. Malicious gossip and social bullying are separate matters. But again, you don’t really know that these people are saying anything that’s actually harmful.

Perhaps you feel it’s more significant if the people you think are talking about you are family members, coworkers, or friends. They may really be talking about you. The point is, even if they are, you have no idea what they’re saying. Most of the time they speak in low tones so as not to upset you, never realizing that that upsets you more. Tell yourself they could be planning a surprise party or talking about Aunt Edna’s affair with a younger man. Not everything is about you.

Ideas of reference may be a factor in imposter syndrome – the feeling that you are not really successful, competent, or talented, but are just faking it, and that everyone around you can tell. Or perhaps your ideas of reference are like intrusive thoughts – sudden, distressing notions that pop into your head, seemingly without cause or warning. These can be anything at all, from “I wonder if my passport has expired” to “Who would miss me if I died?” to “Those people are talking about me.”

What can you do if you have ideas of reference? Resist the urge to ask if the people are really talking about you. That will only make things awkward and worse. Ignore them if you can. (This is not the same as the bad old non-advice about ignoring bullies. You know when a bully targets you. With ideas of reference, you never really know if your fears are true.) Since you didn’t actually hear what the people said, you can realistically assume they were talking about someone or something else entirely. Imagine that one is telling the other that her slip is showing. (Do people still wear slips? I know they don’t wear pantyhose anymore.)

If you feel you must react, use a minimal response such as the good ol’ side-eye, which is sufficiently ambiguous that the person (who may also have ideas of reference) can assume it’s directed at someone else.

Another suggestion I’ve heard is to work with your therapist on issues of self-esteem and self-concept, or to try cognitive behavioral therapy. Some medications may help too. Still, if you feel you can manage it, I think the best idea is to tell yourself “So what?” and move on.

Discrimination: Mental Illness and Disability

A while back I wrote a post called “Another Word for Stigma” (http://wp.me/p4e9Hv-oz), which was about the new-to-me term “sanism” and how it set up a dichotomy between the sane and the insane. While sanism may have been intended to reframe the discussion about mental health issues, I said, “We already know that stigma exists surrounding mental illness. We don’t really need the word ‘sanism’ to redefine it. Or to pit us against one another.”

When applied to mental illness, “ableism” is another word that subtly reinforces stigma. It implies that, unlike the neurotypical population, those of us with mental disorders are differently abled, mentally challenged, or – dare I say it – disabled.

Many of us – including me – have applied for disability and many – including me – have been turned down. Despite that, many of us live with varying levels of ability and disability, which are nearly impossible to see and therefore to prove.

When I applied for disability, I was in the depths of what would once have been called a nervous breakdown. I had mental deficits, emotional instability, trouble performing the skills of daily life, inability to hold a job – certainly at the level that I formerly had, or possibly not at all. My thoughts were disordered. My life was disordered. I got by only with the help of a caregiver – my husband. If that’s not at least partial disability, I don’t know what is.

By the time my claim was denied and my disability lawyer was prepping me for a hearing, however, I was, if not well, at least better. I had found part-time work that I could do at home, which provided as much income as disability would have. At his suggestion, I dropped my claim. Perhaps I shouldn’t have, because the lack of medical benefits has been a constant difficulty.

So, am I disabled? I would have to say, partly. I still cannot hold a full-time job – certainly not without accommodations – and my caregiver (still my husband) has to help me with many of the tasks of daily living.

The notion of requiring accommodations leads us to the subject of discrimination. Employers are required by federal law to provide “reasonable accommodations” to persons with disabilities, according to the Americans with Disabilities Act (ADA), for conditions including “a physical or mental impairment that substantially limits one or more major life activities,” and also to “a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.”

“Reasonable accommodations” are not defined for mental disabilities, but examples of accommodations for other conditions include modifying work schedules, as well as leave flexibility and unpaid leave. But just try telling a prospective employer (as you are entitled to do) that you will need flexible hours to accommodate appointments, panic attacks, or other phenomena; or asking someone you work for to give you unpaid leave for a hospitalization. I think you know the result as well as I do.

One problem is that these forms of discrimination – which is what they are – are damnably hard to prove, as onerous and unlikely as being classified disabled in the first place. Yet the protections against these forms of discrimination are defined by law. But how many of us have the wherewithal to challenge them, prove our cases, and get by while waiting for the results of a lawsuit?

Even the act of asking for an accommodation opens us to yet another instance of stigma, and the outcome depends on the individual knowledge and understanding of an employer, when it should follow the law. We approach employers and prospective employers hat in hand, asking for – but not expecting – to get the treatment that is legally, rightfully ours.

In these days of rampant discrimination against people of any number of races, religions, national or ethnic origins, sexual orientations, and disabling conditions, our voices may not be the first to be heard. But we, the neurodivergent, the mentally ill, the emotionally disabled, the psychiatric patients, and our caregivers and loved ones deserve to be free from the effects of ableism, discrimination, and stigma.

Let’s speak up, keep educating about our issues, and support each other in banishing stigma, ending discrimination, and putting ableists on notice that we will not shut up until our rights are acknowledged.

 

Bonus Post: Poor? Mentally Ill? Sorry, You’re on Your Own

This is a post I wrote for my Et Cetera, etc. blog (janetcobur.wordpress.com), but of course it’s relevant here as well.

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Poverty and mental illness have something in common.

There is a stigma attached to both.

Both are seen as moral failings. If only people tried harder, worked more, improved themselves, they could lift themselves out of poverty. Without relying on anyone else’s help, which would be shameful.

And if only people stopped being so negative, looked on the bright side, smiled more, thought more about others, their positive mental attitude would make all those shrinks and pills unnecessary. They wouldn’t be shooting people with assault rifles and sucking up tax dollars for disability payments, which is shameful.

Society can’t afford poverty and it can’t afford mental illness. Why should we make the effort when the poor and the mentally disturbed don’t?

Why should these two conditions both be associated with such stigma and for such similar reasons? It’s simple. People don’t want to think that poverty or mental illness could happen to them.

The truth, however, is that a vast number of Americans are living one paycheck or one illness away from poverty, and one in four or five Americans will face a mental or emotional disorder at some point in their lives. And they are afraid. So they tell themselves that the conditions only affect Other People. And those people must be stupid or lazy or unmotivated or something, or they wouldn’t be poor or mentally ill in the first place.

And that’s where stigma begins.

And what are the consequences of stigma?

Well, first of all, it means that no one wants to spend money alleviating either condition. If these Other People can’t pull themselves up by their bootstraps and improve, the thinking goes, why should we pay them not to? Job training programs, child care, higher minimum wage, insurance coverage, community mental health centers, treatment programs for addiction, need to be paid for some way, but not with our tax dollars, by God!

And it means we don’t want to look at the Other People for fear of seeing ourselves. Don’t put halfway houses, group homes, unemployment offices, treatment centers, psychiatric hospitals, and other reminders in our neighborhoods. Not In My Backyard!

It’s not just a failure of compassion, though it’s that too. It’s not just a failure of the social “safety net,” though it certainly is that as well. It’s also a failure of the imagination – what would it be like if poverty or mental illness should happen to me? The reality is too unpleasant to think about, so don’t.

And while we’re talking about unpleasant, let’s mention the place where poverty and mental illness intersect – homelessness. Don’t we assume that homeless people are both poor and mentally ill? As such, spending money on them is doubly wasted. Why bother? It’s not like it’s going to help. Poverty, homelessness, and mental illness are incurable, after all. (Unless a person can cure their problems without outside help, of course.)

So what’s my stake in all this? Am I a bleeding-heart liberal do-gooder who wants to cure society’s ills and make us all foot the bill for it?

Well, yeah.

But I’m also living month to month on my income. My husband makes only a bit over minimum wage. We have both, at one time or another during our lives, been on unemployment and/or food stamps. We have no nest egg or emergency fund. It wouldn’t take much in the way of reversals to wipe us out. Even at that, we’re relatively privileged.

And I have a mental illness – bipolar disorder 2. Without insurance, I could not afford to see a psychiatrist, or buy medication (one of mine costs $800 per month), or get inpatient treatment if I ever need it. Right now my condition is moderately well controlled, but if I should suffer a setback, I might not be able to work at all. And there we are, back at poverty.

These two unfortunate conditions – poverty and mental illness – affect me directly, so I can’t look away and say they only happen to Other People. I know that they affect others more severely than they do me, and I don’t know how those people make it through.

But I do know that stigma isn’t helping any of us.

Advice for the Bipolar Writer

Writing can be therapeutic – and more.

Writing can save your life – or someone else’s.

Every one of us, depressed, manic, or bipolar, has something to say.

I say, “Say it!”

Although I’ve never been one to respond to that ancient exercise in which you express your unspoken thoughts to an empty chair, I am a proponent of expressing your unspoken thoughts. I just think writing is a better way to do it.

Getting your thoughts and feelings down on paper or preserved in pixels is a positive, life-affirming action, even if your thoughts might not be. Giving voice to your inner workings can help you understand yourself and your brain better.

And if you choose to share them, they can help others too.

There are many different kinds of writing you can explore and experiment with until you find the one or ones that are right for you. Here are a few you can try.

Journaling. Many therapists recommend journaling to keep track of your moods and mood swings. You can also keep track of your exercise and sleeping and eating patterns in your journal. These factors may help you pinpoint physical symptoms that accompany your emotional ones. And you can get a read on how your meds affect your symptoms and how troublesome the side effects are.

Unsent letters. I have a separate file in my computer for these, just so I remember not to send them. I write letters not to send when I need to vent at or about a person, but am not sure whether I’m overreacting. I can express my feelings without taking the chance of ruining a friendship or hurting a loved one.

Sent letters. Sometimes, after you’ve let those letters or emails sit for a while, you decide that you do need to send them – or at least parts of them. Letters or emails are often the best way to communicate regarding difficult topics because you can think about what’s important to say, consider the best way to say it, and revise if your thoughts are not coming out the way you want them to. You still might want to wait a day before you send them, though.

IMs and comments. When you read someone’s post or a comment that really resonates with you, don’t hesitate to let that person know. If you don’t understand something in a post, just ask. If you disagree, feel free to do so politely. These are chances to open a dialogue, get more information, or correct misconceptions. They can lead to friendships if you comment regularly, but even a word or two of support or thanks can mean a lot to the writer.

Blogging. I started blogging because my journaling was boring and whiny, and I decided I had more important things to write about. There are basically two kinds of blogging about bipolar disorder. One is to share your experiences – your mood swings, your triggers, your relationships, your healing, your thoughts and meditations. The other is to write about issues related to bipolar disorder – treatments, stigma, social policy, news items, books, or opinions. Of course, you can combine both types of writing in your blog, which is what I try to do.

Blogging is powerful. It lets both professional and untrained writers speak their truth and share their thoughts. A blog about bipolar disorder has a “niche” audience – people interested in the subject themselves or because they have a friend or relative with the disorder. This means that you will likely never rival the Bloggess in numbers of readers, but you can touch the lives of hundreds of people.

Blogging does not have to be difficult. You can post every day or every week, every month, or just when it suits you. You can write informally or in a more academic vein. There are a number of platforms, such as WordPress and Live Journal, that make it easy for you to get started, and to make changes as your blogging needs evolve. You can add illustrations and video clips, and links to news stories or other blog posts. Eventually, you may want to have your own personal web page to host your blog.

Fiction and poetry. If you don’t want to put your own experiences out on the web for anyone to see, you could try transforming them into fiction or poetry, or inventing characters and plots that resemble you not at all. Many magazines and other outlets use short stories and poems, and works that feature bipolar characters and themes are not common. Fiction and poetry can be ways to reach an audience that might otherwise never learn about the reality of bipolar illness and its effects on people and relationships.

Longer works. You could even write a book (which is something I’m trying to do). There are many genres to choose from, including nonfiction, memoirs, and novels. Aside from Abigail Padgett’s Bo Bradley series of mysteries, there isn’t much fiction featuring bipolar characters that are true-to-life and not stereotyped. These are long-term projects and, truthfully, you (and I) may never finish them or have them published. But just the effort is worthy.

Whatever form of writing you choose, get started! Whether you write for yourself or for a larger audience, you can make a difference. And if you feel the desire, you should definitely try.

Another Word for Stigma

Stigma concept.Recently I was reading an article online and came across a word I had never encountered before: sanism.

I don’t like it.

Oh, I realize that it’s meant to go along with all the other “isms” – words that point out how the world decides who is worthy of respect, then campaigns for the rights/recognition/understanding of the disrespected. There are lots of “isms,” some familiar by now, and others that just never quite made it.

racism

sexism

nationalism

feminism

elitism

ethnocentrism

ableism

lookism (This one didn’t catch on. It means that pretty people are advantaged.)

colorism (Not quite the same as racism, it refers to the idea that lighter shades of brown skin are preferable to dark ones.)

Not all of these terms are equally adequate. Sexism, for example, refers to the divide between male and female, and implies (though does not call out) heterosexism in particular. It ignores the experience of people with other kinds of gender expression – genderfluid, pansexual, and trans, for example. It probably should be “cis-sexism,” but then everyone would spend an hour explaining that when they tried to use it.

Ableism is another term that has problems. In its basic form, it contrasts the able-bodied against the disabled, or rather points out that the rights and even the humanity of the disabled are discounted. I bet some of you are wincing at the phrase “the disabled.” Times change and terms change. Right now the preferred term is “person with disabilities,” though we have been through other versions – “differently abled,” “physically challenged,” etc.

The general rule in these situations is to call people what they prefer to be called. But how do you know which term that is? Negro, Black, black, non-white, colored person, person of color, and probably a few I’m missing have had their day. And if you use Black, do you also have to use White? Many people do not understand the word Caucasian anymore, and certainly can’t explain why it means the same as white. Nothing you can say will satisfy everyone. Perhaps the best solution is simply to call everyone “Chuck,” or “Emily,” or “Mariko,” or whatever.

So. Back to sanism. My first problem is how to pronounce it. San-ism? Sane-ism? And if the latter, shouldn’t it be spelled saneism? Do we need a hyphen (sane-ism) to keep it from being mistaken for an unfamiliar religion?

But the real problem goes deeper than that. Sanism implies that there are two categories: sane and insane. If you’re not one, you’re the other (and discriminated against, but let’s put that aside for now).

Personally, I have a mental illness (bipolar 2), but I don’t think most people would classify me as insane. And there are many other people with OCD, PTSD, phobias, anxiety disorders, etc., who have difficulties because of them but are by no stretch of the imagination insane. Do we go back to the days when anyone with a neurosis was sane and anyone with a psychosis was insane? Does anyone still divide the world up that way, or has the DSM caught up with reality?

What, then, do we call ourselves? Non-sane? Not-sane? Mentally ill? Mentally challenged? Mentally unhealthy? Neurodivergent? Emotionally disordered? Nothing seems to encompass all of us. Nothing seems to work. But the “ism” suffix implies lining up two groups to make it easier to talk about the differences between them. It doesn’t always work perfectly – racism can be black/white, black/Asian, Hispanic/Anglo, etc. – and you sometimes have to define exactly what you mean.

Admittedly, the sane (able-minded? neurotypical?) have automatic, inherent advantages over whatever-we-decide-to-call-ourselves. Housing, jobs, even service in restaurants are weighted in favor of people with no psychiatric/psychological label or diagnosis.

But wait! We already have a word for that – stigmatized. Sanism sets up the contrast between those who consider themselves “normal” and those that the normal consider “abnormal.” In other words, stigmatized.

We already know that stigma exists surrounding mental illness. We don’t really need the word “sanism” to redefine it. Or to pit us against one another.

We have mental or emotional disorders. We are discriminated against – hated, feared, shunted aside, diminished, discounted, blamed, or avoided – because of that.

That’s stigma.

That’s what we have to fight.

Not “sanism.”

The Scientific Tease

Fun doctor

I know the headlines and accompanying news stories are supposed to give us hope: New Treatments for Mentally Ill, Scientific Advances for PTSD Suffers, How Research Is Finding Causes – and Possible Cures – for Bipolar Disorder, Brain Science May Explain OCD.

But the reality is that those headlines are teasers. Once you read the story, you realize how little is new, how far from reality the science is, and how long it will be until the supposed cures make any difference.

I’ve written on the subject before (http://wp.me/p4e9Hv-7Z), and included a link to a short video that explains the scientific process, from original study up to the time when a new drug or treatment hits the market (http://www.vocativ.com/culture/junk-science/).

But drugs aren’t all the scientific world is offering for people with bipolar and other mental disorders. There are transcranial stimulators, magnets, fMRI, and other technologies that hold promise for at least understanding our illnesses and, in some cases, treating them. Studies of the human brain, DNA, epigenetics, neurotransmitters, precursor chemicals, and more are touted as ways to unravel the mysteries of why some people get mental illnesses and some don’t; why some medications work for some people and not for others; and how the medications that actually do work do what they do.

If you are buoyed by the hope these scientific articles and the advances they hold out, you may envision a world in which parents can tell when a baby is liable to depression and watch for early signs; a troubled teen can be diagnosed with bipolar 1, 2, or psychotic bipolar; which particular “cocktail” of drugs is the best fit for an individual; how a small machine can send signals to the brain that will ease the symptoms of, well, anything.

Unfortunately, that’s not true. Oh, there is scientific research going on – although there would be more if funding for mental health issues were taken more seriously. But not all that research will result in effective, practical treatments for mental illness – more closely targeted drugs, new understandings of various psychological models, new methods of diagnosis. A breakthrough, when it comes, may even be discovered as an unexpected side effect of something else entirely.

Besides, can you imagine these wonder drugs and diagnostic tools, and nanobot treatments (or whatever) making it to the vast majority of the mentally ill? Will psychologists be able to send clients to get an fMRI to pinpoint problems, and will the insurance pay for that? How would you convince a homeless schizophrenic to place his head in that clanking machine, hold still for half an hour, and answer question? How long will it take the FDA to study and approve a new drug, and will it cost $12,000 or more per year? And will insurance coverage even be available because it’s still considered “experimental”?

Frankly, I can’t see most of these heralded miracle treatments making their way down to the community mental health center level anytime soon, even once they’ve been developed, tested, proven, and put on the market. Like so much of medicine, I fear psychiatric advances will be available only to the rich or those with platinum-level insurance. And although one in four Americans will experience some form of mental illness in their lifetimes – and millions more friends, relatives, caregivers, and loved ones will be affected by it as well, psychiatric topics don’t draw government or university funding or charitable support the way other conditions like HIV, breast cancer, and heart disease do.

So forgive me if I see those uplifting headlines and think, “Pfft. More pie in the sky.” I do think progress is being made and will continue to be made, but I doubt whether it will be soon enough, or tested enough, or cheap enough, or available enough to benefit me. You younger folks, now – you may still reap the benefits of these remarkable advances. But in the meantime, while you’re waiting for that magic pill or Star Trek device, keep on taking the meds you’ve been prescribed, and talking to your psychotherapist, and building a support system, and taking care of yourself.

For now, let’s work with what we’ve got.

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