My Experience Only. YMMV.

Posts tagged ‘media and mental illness’

I Don’t Care If They Discover the Cause of Bipolar

Recently there have been several so-called “breakthroughs” in discovering the cause of bipolar disorder.

And I really don’t care.

Whatever they decide the cause is, I still have bipolar disorder. No matter if it’s toxoplasmosis, gut bacteria, or faulty synapses that are behind it, I still get to experience the lows and (sometimes) highs, the apathy and psychological pain, the weeping and despair, the irritability and touchiness, the anxiety and the gloom.

Knowing the cause will not alleviate my symptoms one bit.

I know that people believe that discovering the cause will bring us that much closer to a cure.

But will it really?

If the cause is genetic, how am I supposed to go back and change my genes? Or does anyone really believe that gene therapy will be available to the mentally ill when even hospital beds are denied them?

If the cause is viral, does that mean that a cure is right around the corner? We now know what virus causes AIDS – HIV was discovered in 1983 – but nearly 35 years later, a cure is still far away. Yes, there are treatments that improve health and extend life, but there are also treatments that alleviate some of the symptoms of bipolar disorder. Will any advances be orders of magnitude greater, or merely incremental? And how much money will be devoted to finding those treatments when Huntington’s disease, multiple sclerosis, and a host of other conditions are still without a cause, a cure, or sometimes even minimal treatments?

With most bipolar sufferers being treated (if at all) in community mental health centers, via EAPs, or through six-weeks-and-out insurance programs, what are the odds that any new breakthroughs and any new treatments that result will be available to the bipolar-on-the-street (or in the group home or even at home or at work)? Will someone really arrange MRIs or TMS or brain implants for the homeless?

With bipolar disorder once again considered a pre-existing condition and not given parity with physical ailments for insurance purposes, will any advances trickle down to us at all?

What do you want to bet that any breakthroughs regarding the causes of bipolar disorder will lead to more pharmaceutical research and yet another pill that costs more than the average person can pay or the average insurance will reimburse? And how long will that treatment take to get through the FDA pipeline to reach the people who need it?

Nor is knowing the cause of a disorder necessary to cure it. Isaac Semmelweis didn’t need to know the cause of childbed fever, a disease that killed thousands – perhaps millions – of new mothers. Germ theory wasn’t even developed until decades later by Lister and Pasteur. But Semmelweis knew that if only doctors washed their hands between conducting autopsies and putting their hands in pregnant women’s vaginas, the death rate would decrease.

So when I hear that there’s a new theory on the cause of bipolar disorder – and they seem to be coming with increasing frequency – I say, “Where’s the treatment? Where’s the cure? Who will be able to access it? Who will be able to afford it? When will it produce positive results for me and those like me?”

Get back to me when you’ve found something that will help. Until then, keep splicing your genes and culturing your bacteria and stimulating your synapses. I’m getting pretty good results with what you’ve already discovered. For now.

Don’t keep raising my hopes until you have something more than “mights” and “some days.”



Discrimination: Mental Illness and Disability

A while back I wrote a post called “Another Word for Stigma” (, 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.


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.








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 (, 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 (

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.

What Is Sanity?

And who is sane?

Negatives Positives Computer Keys Showing Plus And Minus Alternatives Analysis And Decisions
These are questions you don’t hear much anymore, at least outside of judicial proceedings. Even there, the phrase “guilty but mentally ill” is gaining currency. “Not guilty by reason of insanity” made people think a criminal was getting away with something. And indeed, the “insanity defense” has been misused.

We’re much more comfortable talking about health and illness, concepts we all understand, than about seemingly fixed states like sanity and insanity. They sound so final. At least illness can be treated; health can improve.

Before the deluge of psychiatric labels and the DSM, how to tell if a person was sane or insane was a vital question. The insane were put away – in an asylum if they were poor or kept discreetly out of sight at home if they were wealthy.

But were all the people in asylums insane? And what kind of treatment did they receive? Investigative journalist Nellie Bly determined to find out. Her 1887 exposé Ten Days in a Madhouse was a muckraking revelation.

Bly feigned amnesia and delusional fears, was reported to the police by her landlady, and declared incurably insane.

While she was at the Women’s Lunatic Asylum on Blackwell’s Island, she experienced cold, hunger, brutality, and no diagnosis or treatment. Several of the other inmates were, like Bly, sane by any modern standard, but poor, friendless and alone. The newspaper she worked for arranged to have Bly released, but the other women remained to be beaten, choked, starved, humiliated, not treated and driven insane if they weren’t already.

Bly’s ordeal and testimony did prompt a grand jury to recommend an increase in funding of $850,000 – quite a large sum in those days – for the Department of Charities and Corrections, which oversaw asylums. (It is ironic to note that the word “asylum” originally meant a place of protection, safety, or shelter.) But it mainly went for better physical conditions – warmer clothes, edible food, more and better-trained nurses – rather than actual diagnosis and treatment of the women’s “insanity.”

The question of who is sane and how you can tell was revisited in 1973 by psychologist David Rosenhan. A professor at Stanford University, he devised a simple experiment. He sent eight volunteers, including both women and men, to psychiatric hospitals. Each person complained of hearing a voice saying three words – and no other symptoms.

All – all – were admitted and diagnosed, most of them as schizophrenic. Afterward, the “pseudopatients”  reported to their doctors and nurses that they no longer heard the voices and were sane. They remained in the psychiatric wards for an average of 19 days, beating Nellie Bly’s experience by nine days. They were required to take antipsychotic drugs as a condition of their release.

Rosenhan’s report, “On being sane in insane places,” created quite a stir. Indignant hospital administrators claimed that their staff were actually quite adept at identifying fakes and challenged Rosenhan to repeat the experiment.

This time hospital personnel were on their guard. They identified over 40 people as being “pseudopatients” who were faking mental illness. Rosenhan, however, had sent no volunteer pseudopatients this time. It was a dismal showing for the psychiatric community.

Times have changed, of course. Few people are confined in locked wards for life. Diagnosis is, if not yet a science, less of a guessing game, backed up by the DSM and assorted checklists of symptoms. And insurance companies hold the keys to psychiatric units as much as medical personnel do.

Still, the fundamental questions remain. Are neurotics sane and psychotics insane? I have bipolar 2. Am I mentally ill? I would have to say I am, since my condition will require treatment, barring any dramatic scientific advances, for the rest of my life. And my illness does affect my ability to function “normally.” Yet I think that few would consider me insane (unless I were suddenly to start shooting people in a public place, of course).

Speaking freely about mental illness and mental health is, presumably, supposed to make such disorders more understandable, less fearsome, less stigmatized. I suspect, however, that there are those who would rather we remained out of sight – if not locked away in asylums, then restrained in the virtual straitjackets of strong psychotropic medication.

And while group homes and other sorts of assisted living situations are now more available (though not nearly as accessible as the need for them would require), the general public prefers that such facilities, along with halfway houses for addicts and parolees, be constructed “NIMBY” – Not In My Back Yard.

Out of sight, out of mind.

Maybe the conversations surrounding such issues are reducing the stigma of mental illness, or insanity, or whatever you choose to call it, but I’m dubious about the level of success. There’s still a long way to go.


Beware the Mental Health Meme

This post was specially written for BlogHer’s Social Media and Blogging section, but I thought it worth sharing here too. (Credit for the photo goes to my husband, Dan Reily.)



Most Internet memes are harmless, or even amusing. They proclaim that someone has a wonderful granddaughter or that kittens are cute.

But some memes that travel the world sow unhelpful or even hurtful ideas as they go. The one above appears mild and even inspiring, but to a person with mental illness, it says a lot more than appears on the surface.

The meme that started me on this train of thought was one that invited people to embrace the crazy or enjoy the madness or some such. As a person with mental illness – bipolar disorder – I found the message troubling. The comments were even more so. One said that manic-depressives could at least enjoy the mania.

Admittedly, mania comes with feelings of soaring confidence and a whirlwind of creativity. Mania can also prompt risky behaviors – reckless driving, shoplifting, unsafe or extramarital sex – that can lead to a lifetime of problems, including failed relationships, arrest records, serious debt, and worse. Those are surely the opposite of enjoyable.

But I didn’t know if I was alone in these feelings, so I asked other bipolar bloggers how they react to popular memes. Here’s what they had to say.

Nondescript inspirational memes (of the sort that proclaim daylight follows darkness) seem relatively harmless. Reactions went from “meh” to “a waste of time.” Bipolar blogger Brad Shreve ( likens them to affirmations. His research showed that evidence from reputable studies confirms that affirmations mitigate stress. Nevertheless, “I find most of them trite and condescending,” he says. “They just aren’t my thing. I choose meditation.”

Amy Balot, who blogs at, dislikes the sort of memes that tout positivity. “I do have a big problem with the way a lot of ‘motivational’ images seem to imply that all you need to do is think positive thoughts and your life will be hunky-dory,” she says. “It seems to be blaming people for things like depression or anxiety.”

Supposedly positive memes raise the hackles on a number of the bloggers. Dyane Leshin-Harwood, blogger at and author of the upcoming memoir Birth of a New Brain, says they range from “cool and empowering” to “[make] me feel guilty that my life isn’t as good as it could

be! It seems like it would bring anyone with bipolar depression down even

It does that to me as well.

Many such memes also promote a “bootstrap” approach to mental illness – which Jim Buchanan, who blogs at, finds “irritating”: “I feel that this sort of thinking is harmful and it essentially blames the person reading it for their problems by implying that they ‘don’t want to allow themselves’ what is needed for a good life.”

Shreve adds, “Usually these entail [the idea that] the individual can change by doing one thing – [changing] our attitude. As if we could just snap out of depression, mania and more, if we would just put [our] mind to it. I find these guilty of mental health shaming.”

And as for the “find-your-sanity-in nature” meme that began this article? Amy Balot doesn’t care for that type. “I don’t dispute that spending time with animals or outdoors can be great and even therapeutic; but I do dispute the implication that these things are a replacement for therapy or better than therapy,” she says. “It minimizes the struggles of the mentally ill and says they’d be ok if they just took their dogs for more walks in the woods. Not all problems are solved by a little sunshine and fresh air.”

Memes intended to be humorous are a gray area, since humor is so subjective. Personally, I don’t mind being called “crazy,” but many bipolar people do. Using “crazy,” “insane,” or any of the many synonyms – “weird,” “eccentric,” “not normal” – can make people with mental disorders feel as if the meme speaks directly to them, even if that wasn’t intended.

But some people with mental disorders enjoy a gentle poke of fun at themselves. Shreve agrees: “These can be touchy because they could hurt or offend someone who is going through a difficult time, but they help me.” (Here’s one of his favorites:

I must admit that I can sometimes see humor in our situations. I’ve written pieces called “The Lighter Side of Insomnia” and “Confessions of a Crazy Cat Lady.” It’s not a matter of malice being intended; I don’t think people who pass along memes that we consider hurtful are “out to get” those with mental disorders. But that’s the problem: They don’t think before they click “Share.”

So I’m asking: Please think first. One of four Americans will have a mental or mood disorder at some time during their lives. You wouldn’t make fun of someone with a physical illness. Ask yourself: Would this meme still be amusing or inspiring or helpful if you substituted fibromyalgia or diabetes or paraplegia for “mental illness”?

If not, think again.

The Wrong Life

Nothing prepared me for this.

This is not the life my upbringing prepared me for. I don’t just mean the special guest speakers we had in home economics class who tried to introduce us to the subtleties of silver, china, and stemware. No, I was also misled by the books I read.

If Life Is a Bowl of Cherries, What Am I Doing in the Pits? and Please Don’t Eat the Daisies led me astray. Don’t get me wrong, I’m a total fan of Erma Bombeck’s writing style, but the quirky suburban life she loved and lamented was not what I got. Bombeck and Kerr both made light – and fortunes – of portraying the petty foibles and cute misunderstandings of women and their husbands, women and their children, women and their neighbors, women and other women.

Daily disasters with dishwashers, sticky-fingered children, and clueless husbands were an endless source of amazement and amusement for them. They soldiered on, supported by an innate buoyancy, faith in the divinity, and the occasional glass of wine.

My glasses of wine have been more than occasional. My disasters have not been humorous. I do not have children, and the cats are somewhat deficient in making adorable conversation in high-pitched, lisping voices. Sometimes all I can get out of them is “meh,” which is pretty much how I feel too.

As for the trappings of the genteel life, we eat off paper plates more often then not. I did once have a set of Limoges, but only because I was acting as a pawnbroker for a friend who needed ready cash. I fed one of the cats on the Limoges saucer, just to say that I had.

My parents used to say that their house was decorated in early married junk and I have followed in that fine tradition. Most of our furnishings are a demonstration of the maxim: If it’s not from Kmart or Goodwill you won’t find it here.

No one’s life prepares them for clinical depression, hypomania, bipolar disorder, or any other mental illnesses. I’ll wager that even psychologists’ kids don’t have a clue when they escalate from picking scabs to experimenting with lit cigarettes. Maybe their parents don’t either.

Either the mental disorder has been going on so long that you don’t know what it’s like without it, or it comes on so suddenly that you desperately hope that it goes away just as suddenly. Or it comes in a way that you can just convince yourself is no big deal. “I overspend? That’s just because I love shopping, not because I have mania or need to validate myself with expensive things.”

Perhaps people who grow up with a mentally disturbed loved one have a chance of understanding the underlying mechanisms. But with the number of families who don’t discuss the “elephant in the room,” or pass it off as, “Your sister is just high-strung” or say, “Uncle Ted is a little odd. Just ignore him,” not even that exposure may help.

How do young people learn about mental illness? Or even – gasp! – get help for one? If not at home, maybe at school? The National Association of Secondary School Principals cites the U.S. Surgeon General’s report saying that “one in five children and adolescents will face a significant mental health condition during their school years” and that the ratio of school counselors to students is 471:1. Add to that the fact that most school counselors have been shifted away from offering personal and emotional support to offering academics-only services. (

Most of us struggle alone. Some never find a proper diagnosis and treatment. We have to be our own resources and our own advocates much of the time, even if our illnesses do not allow us to get out of bed. If we have one family member – or even a close friend – who understands, we are lucky beyond measure.

I wish that I had been even slightly prepared for the life I now lead, instead of the one I was “supposed” to have. No one can predict the future, but why can’t we at least have a bit of mental health education in school? I suppose that’s a lot to ask, when even sexuality education varies from the merely adequate to the appalling, when schools are barely able to stay abreast of the teach-to-the-test curriculum, and when Texas’s governor vetoes a bipartisan bill allocating resources for mental health, based on lobbying by Scientologists.

Do I sound bitter because I didn’t get to live the genteel suburban life? Probably. But there are aspects of that life that likely would have actively impeded my search for mental health. So I’ve had to do it on my own, or nearly so, at least until recently. A lot of us go DIY for mental health.

But a lot of us are accomplishing it. Living the life we have and not some fictitious pie-in-the-sky one. We may not have been prepared for it, but we muddle through anyway – and sometimes even realize that imperfect real life is better than a perfect lie.

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