My Experience Only. YMMV.

Posts tagged ‘news stories’

Are Political Extremists Mentally Ill?

Yes.

Well, some of them are. Given that one in four of Americans experiences a mental or emotional disorder at some time during their lives, 25% of any given group either are, have been, or will be affected by mental problems. Politicians. Girl Scout leaders. Chefs. Whoever.

Of late, though, it seems that political extremists – and politicians, of course – are being singled out for accusations of mental illness. And as for terrorists, they are in common understanding all mentally ill, so anyone you label as a terrorist is automatically insane. But we’re far from agreeing who is and is not a terrorist. (Antifa? Greenpeace? The NRA? The DAR?)

Admittedly, some of the extremists’ actions and statements seem “crazy,” but let’s stick to the more technically correct “mentally ill.”

Except it isn’t technically correct in most cases.

A lot of people seem paranoid these days. Everyone on the “other” side is out to get them, destroy America, or at least scare the pants off us. Conspiracy theories abound. And nearly all of them are crazy. (I wrote about this a short while ago: http://wp.me/p4e9wS-AH).

But “paranoid” is a clinical term in psychology, and it has a specific meaning: Paranoid Personality Disorder is a psychiatric condition, manifested by, among other things, “generally unfounded beliefs, as well as … habits of blame and distrust, [which] might interfere with their ability to form close relationships,” as WebMD says.

Those traits your political or social opponents may have, but most of them don’t also:

  • Read hidden meanings in the innocent remarks or casual looks of others
  • Perceive attacks on their character that are not apparent to others; they generally react with anger and are quick to retaliate
  • Have recurrent suspicions, without reason, that their spouses or lovers are being unfaithful

Diagnosis at a distance is dangerous, as well as bogus. The fact is that none of us (except perhaps psychiatrists) can diagnose a person as paranoid or any other variety of mentally ill without having met the person and performing detailed interviews and tests (I’ve written about this too: http://wp.me/p4e9Hv-6F).

This is also true of public figures. We can say that Donald Trump, to choose an example not entirely at random, has narcissistic traits; or is a narcissist in the garden-variety, non-technical meaning of the word; but we cannot say that he has Narcissistic Personality Disorder, an actual clinical diagnosis. We may think he’s crazy, but we can’t say whether he’s mentally ill.

Public readiness to label people, both acquaintances and public figures, with loose pseudo-psychiatric terms raises a number of problems, particularly stigma.

Labeling is a convenient way to dismiss a person who disagrees with you without listening to what he or she has to say, or considering the possible validity of an argument or even a statement of fact. If we apply a label, we make an assumption about a person that may or may not be true.

Stigma comes with the label mentally ill. People with diagnosed mental disorders are too often assumed to be violent, out-of-control, homicidal (or suicidal) maniacs – and therefore not worth listening to. In fact, many people with mental illnesses have no impairment in their cognitive function. It profoundly devalues them to dismiss them from political and social topics of conversation.

So, bottom line. “Those” people may be crazies, may act crazy, talk crazy, believe crazy things, but it is not accurate or helpful to call them crazies. Neither is it helpful to label someone who has never been diagnosed or has never been open about a diagnosis as mentally ill.

I just think that how we talk about people affects how we treat them. And that matters.

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” (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.

 

But What Happens in January?

Health insurance is a hassle, especially when you’re talking about mental health. And it’s an even bigger hassle when the government gets involved. That’s not necessarily a bad thing, but it does add a layer of complexity to the insurance process.

For quite a while I was uninsurable, or functionally so. My husband and I both had decent insurance when he worked for the county, but after he left that job, it was all downhill. We muddled through without coverage, paying for our meds out of pocket and avoiding the doctor’s office unless death seemed imminent or we had to have blood work. Mammograms, flu shots, and other preventive services fell by the wayside.

Then came the Affordable Care Act, aka Obamacare. Our pre-existing conditions were no longer a factor. My mental health coverage was guaranteed without going through the county’s EAP plan (Employee Assistance Plan, a six-week, take-the-therapist-we-give-you, cure-’em-quick affair).

The only problem (well, the major problem) was that, even with the ACA subsidy, the insurance cost us $650 per month. And my doctor started prescribing Abilify (cost: $800 per month, and wouldn’t you know, it wasn’t on the insurance plan’s formulary of preferred drugs). Fortunately, the generic came out soon after. It still wasn’t cheap, but it was somewhat lower.

The next year we switched plans. Unfortunately, the new company, a co-op, went under and we were transferred to yet another plan. It was no better than the previous one. In many ways, it was worse.

Prescriptions, for example. After getting them filled at our pharmacy for a certain number of months, we were told that almost all our meds MUST be ordered for home delivery, or the insurance company would not pay for them.

Which would be fine, as they were maintenance drugs. Except that meant paying $1100 for three months of generic Abilify, in addition to the monthly premium for the insurance. I can’t scrape together a lump sum like that, so through GoodRx coupons (https://www.goodrx.com/?c=criteo_au&utm_campaign=activeuser) and the local Kroger, I managed to get my prescription for under $200 per month.

Then the real fun started. My husband’s meds and my non-psychotropics went through the mail-order system easily. The ones my psychiatrist prescribed, not so much.

I’ve just spent the time between November 19 and now trying desperately to get the mail-order place and my doctor’s office to talk to each other, fax each other, send smoke signals or carrier pigeons to each other, to get me my drugs. As I gradually ran out of meds, which I’ve written about before (http://wp.me/p4e9Hv-kO).

I finally got a little action when I went to my doctor’s office, camped out in the waiting room, talked to one mail-order person on the phone while the receptionist talked to another one on another phone, and the nurse worked the fax machine. Then I went home, called mail order again, jumped up and down, threatened to hold my breath until I turned blue, asked for the supervisor, talked to the actual pharmacist, and almost burst out sobbing. Yesterday I got my pills.

This time when I had to pick a new insurance plan or renew my old one, I found one that was almost exactly as crappy as our previous one, but at one-third the cost. And the company representative says that all generics can be bought, at either the pharmacy or via mail order, at the same low co-pay. Including generic Abilify.

We’ll see.

The next problem is, as I’m sure you’re all aware, the president-elect and Congress have sworn to repeal Obamacare as soon as they get into office, whether or not they have a plan to replace it.

What will happen then?

Will I be able to get affordable insurance?

Will I be able to get insurance at all? (Even crappy insurance is better than none.)

Will it cover mental health services? Outpatient? Inpatient? Both psychiatrists and psychotherapists?

Will it cover psychotropic drugs at the same rates as others? Or will the meds that really work for me not be in the formulary of preferred drugs?

And how long will it be before even the crappy, but lower-cost, insurance that begins on January 1st, disappears?

I’m guessing (hoping) that our insurance won’t vanish immediately, given the pace at which the government usually moves. But repealing Obamacare (though not replacing it) has been touted as one of the first things the new administration will do. And anxiety is one of my psychiatric problems. How long will I have to wait, unknowing, to learn what those answers will be?

Generally, I have anxiety when I don’t know what’s going to happen. I catastrophize, then feel at least a little better when the answer comes. (It’s usually not as bad as I had anticipated.)

But this time, when the answer comes, will it lessen or increase my anxiety?

And will I be able to afford the medicine that keeps my anxiety in check and the psychiatrist who prescribes it?

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.

__________________________________________

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.

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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