My Experience Only. YMMV.

Posts tagged ‘stigma’

The One Pill I’m Embarrassed About Taking

I know that there are lots of people – and not just the bipolar ones – who don’t like taking medication and especially don’t like needing to take them. It’s a reminder of their illness, I guess, or a dependence on a chemical answer when we’ve been told for so long, “Just say no to drugs” and indoctrinated by DARE. The only thing they leave out is that some drugs are good for you – the prescribed ones that allow you to live and function.

I don’t mind my psychotropic medications. In fact, in many ways I love them. They are the things that keep me relatively stable, on a mostly even keel, and make sure that none of my mood swings lasts more than a couple of days. I loathe pill shaming and consider it just one more kind of stigma that attaches to mental illness (and other chronic illnesses).

But there is one medication I take every day that gives me pause. It is my sleeping pill. My psychiatrist prescribes them and I take one every night, along with my other nighttime pills. In about 20 minutes to an hour, I’m asleep, and I stay asleep usually until 8:00 a.m. or so. It means I get about eight or nine hours of uninterrupted sleep per night.

I do need that sleep. I’m not one of those people who can function on four or five hours of sleep, the way tech geniuses and high-powered execs claim they can. If I don’t get my eight hours – and sometimes even if I do – I take naps during the day. Not just naps: mega-naps. My brain and body sneer at 20-minute catnaps. If I’m going to sleep, they say, it must be an hour at a minimum. Two is even better.

It’s not like I want to go back to the days before the sleeping pills, either. I do still remember the long nights of fear and sorrow, the fits of crying, the panicky sensation of not being able to breathe. The endless mental replay of every stupid thing I’ve ever done. The anticipation of the disasters the next day would bring. The hopelessness and the helplessness and the loneliness. The feeling that I was the only being awake, maybe in the world. If a single little pill can save me from all that, I should be glad to take it.

Why, then, does it bother me?

Perhaps it’s because it doesn’t feel necessary in the way my psychotropics do. They are prescribed for my bipolar condition and somehow make the difference in how my neurotransmitters operate. The sleeping pill feels like a different category of drugs.

Or perhaps it is because sleeping pills are often a drug of abuse and even suicide. My psychiatrist trusts me with them, though, and has for years. Plus, my anti-anxiety med is also often abused and I feel no guilt about taking that.

Maybe it’s because a sleeping pill feels in some way like a luxury. I don’t think it does anything specific for my bipolar disorder – except that sleepless nights are certainly associated with depression and my middle-of-the-night anxiety as well.

I hate to think it, but maybe the pill-shamers have gotten to me. I take such a cocktail of assorted psychotropics that it’s perhaps natural I should ask myself every now and then if I’m overmedicated (my doctor doesn’t seem to think so) and whether I could do without any of the drugs. The sleeping pill is the only one that might be in that category.

But no. I don’t want to go back to the nights of distress, despair, and devastation. I don’t want to wake my husband up as I gasp for breath and need him to stroke my hair until I fall asleep. And I surely don’t want to go through those bad feelings all alone in the night while he works the third shift.

All in all, I think the sleeping pill is a good thing for me and that I shouldn’t try to give it up. I just wish I didn’t feel so ambivalent about it.

 

 

Men, Women, and Mental Health

My husband is no stranger to situational depression. He experienced it when his father died, when a beloved pet passed unexpectedly, and when his job turned suddenly more stressful and meaningless.

But he didn’t understand clinical, chronic depression. “What would it be like if those feelings lasted for months at a time, or even years?” I asked. He said he couldn’t even picture it. “That’s the way my life is,” I explained. Then he lost his job, and after a brief period of relief from the stress, he finally experienced depression that lasted more than two weeks – two years, in fact, during which he was unable to work.

He did not seek help for it until his best friend and I both proactively encouraged (i.e., nagged) him to do something about it. He’s been on an SSRI ever since and has occasionally seen a psychologist.

Lately, there has been a movement to educate men about mental illness and mental health. Primary among its goals is to help men understand that mental illness is a thing that can affect them and that there is no shame in asking for help.

Certainly, the statistics bear out that the majority of mental health consumers are women. Psychology Today reports: “Research suggests that women are about 40% more likely than men to develop depression. They’re twice as likely to develop PTSD, with about 10% of women developing the condition after a traumatic event, compared to just 4% of men. It’s easy to write off this epidemic of mental illness among women as the result of hormonal issues and genetic gender differences, or even to argue that women are simply more ’emotional’ than men. The truth, though, is that psychiatrists aren’t really sure why mental illness is more common among women.” Perhaps the answer is that seeking treatment for mental illness is more common in women.

Prevention magazine says that there are four mental health conditions that affect women more than men: depression, anxiety, PTSD, and eating disorders. That PTSD is twice as common in women may surprise you, though the stats about eating disorders are not likely to. The fact is that, although few women experience the traumas that soldiers do, they are much more likely to experience other sorts of trauma, such as rape, which can also lead to PTSD.

But men experience societal and psychological barriers to getting help when they need it. Among the excuses you hear are these:

  • I don’t really need help.
  • I can handle this myself.
  • I don’t want to appear weak.
  • I might lose my job if anyone finds out.

In other words, a lot of bullshit that boils down to “I’m a man and mental illness is not manly. Asking for help is not manly. Talking about emotional problems is not manly. Taking medication for a personal problem is not manly. Not being able to deal with my problems, especially emotional problems, is not manly. Therefore I have no mental problems and don’t need treatment for them because I’m a man.”

Or, looked at another way, the campaigns against stigma around mental illness have been less than effective for most men. Now the attention to that problem, which is surely needed, is beginning to be heard and, one hopes, acted upon.

Still, it’s important to remember that mental illness is not just a men’s problem or a women’s problem. It is a human problem, affecting both genders (and all ages and races) if not equally, then without discriminating.

It is important to get men the mental and emotional help they need, in a timelier and more comprehensive fashion.  I would have liked to see my husband be willing to recognize when he needed to get help and to get it without being pushed. But it would be wrong to push the needs of women aside to accomplish this. This is a societal problem, and while right now spreading the word to men is particularly important, our goal should be to make sure that all people are aware of the prevalence of mental illness, the fact that it can happen to them, and that there are places to get help. That message, at least, is not gender-specific.

Big Box Mental Health

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According to an article published on the blogsite She Knows, “a Boston-based company that manages mental health care for 40 million people, has opened a small clinic in a Walmart location in Carrollton, Texas, and has plans to expand the program in other retail locations throughout the country.”

And I don’t know whether to vomit or applaud.

Walmart’s ubiquity is one point in its favor. They’re everywhere. And for some people, whether they love or despise Walmart, it’s the only choice they have for groceries, household goods, or much of anything else. Those areas are also likely to be underserved by the mental health system, such as it is.

And sparse as the options offered by the Walmart walk-in clinics is – treatment for anxiety, depression, grief, relationship issues, and stress management – it’s more than a lot of people have access to now. The trial site is said to be staffed with one licensed clinical social worker, has a sliding fee scale for those with no insurance, and will soon be approved for Medicaid reimbursement (it is hoped). There will even be remote Skype therapy services if necessary.

All that is good, as far as it goes. But does it go far enough? Will people be able to get more than a pat on the head and a pep talk as they do their weekly or monthly shopping? How will the walk-in clinic handle referrals for people with serious mental illness or a need for psychotropic medication, something that clinical social workers can’t provide? How many people can get help from a single professional? How good is internet therapy? And what percentage of Walmart shoppers have access to the internet?

The walk-in clinics are touted as reducing stigma around mental health issues. After all, the thought is, getting your mental health services at Walmart will become as natural as getting a haircut or an eye exam there. Well, maybe. On the other hand, how many people are willing to have their friends and neighbors see them publically, sitting in the waiting room or ducking surreptitiously through the door? It seems to me it might perpetuate stigma, rather than lessening it.

Besides, Walmart is hardly a bastion of high-quality goods and services. Will the mental health services be second-rate as well? It could be that even second-rate care is better than no care at all. But it’s surely not enough to deal with issues that require long-term therapy with actual treatment plans; scheduled repeat visits; building a relationship with a particular therapist; access to medications; and all the other aspects of more effective treatment, especially considering complicated disorders like bipolar, OCD, or anorexia.

I fully admit that I hate Walmart – the way they have driven out local Mom and Pop stores, for example, and the way they treat their employees. But I have many choices of where to shop near where I live, and access to both therapists and psychiatrists, and insurance that covers my appointments and medications. If I weren’t looking through the lens of privilege, I might see things a lot differently.

So for now, I guess my attitude is to wait and see. One test location does not a Walmart Psych Empire make. Perhaps it will succeed; perhaps not. Perhaps it will become the Great Clips of the psychotherapy world.

But while I’m waiting, I’m hot holding my breath.

 

The Appropriate Committee

 

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When I was a teenager, my life was spent resenting the Appropriate Committee. I always ran afoul of them.

It seemed there was some nebulous group, invisibly judging us and deciding whether what we did, or wore, or how we acted was appropriate or not.

Part of the Appropriate Committee was, of course, the adult world. Teenagers were supposed to be polite and respectful and not talk or play music too loudly. To do otherwise would be inappropriate.

The social milieu was also part of the Appropriate Committee. How we monitored one another to make sure our pants weren’t too short, or that we didn’t wear ankle socks, or that we didn’t stay in the Girl Scouts past Brownies. The punishment was derision.

Of course being bipolar didn’t help. Both adult and junior versions of the Appropriate Committee took note of my mood swings – my loud, inappropriate laughter; my extreme, inappropriate crying; my extended, inappropriate isolation.

I tried to defy the Appropriate Committee. I laughed at them, thought they were stupid, and vowed not to let them run my life. They did anyway, of course. They were all-powerful and I had not yet gained the wherewithal not to care. It was like a pervasive, invasive form of bullying: Everything I did or said was wrong. The rules changed capriciously. I was punished with disapproval, mocking, and the wrong kind of laughter.

And they broke me. At times I tried desperately to fit in, to live up to expectations, to suppress my differences. At other times, when the effort became simply too much, I let my natural weirdness float to the surface and looked for the few other like-minded individuals that could tolerate that. Depression set in and, rarely, hypomania. I still dressed “wrong.” I still laughed at the wrong things, and too loudly. I still isolated and wept.

I thought that when I grew to adulthood, I would no longer be subject to the censure of the Appropriate Committee, Of course, that was completely delusional. I learned that the Appropriate Committee for Adults was a powerful force. It is particularly insidious in the business world, where it judges not just your appearance, but even seemingly minor matters such as where and how you eat lunch (with the “cool kids,” of course) and how you spend your breaks (cigarettes OK, crossword puzzles not). There’s still the problem of being laughed at in meetings and needing to go into the restroom to cry.

I finally realized that the Appropriate Committee exists in part to perpetuate stigma. So many of the behaviors of people with mental illness defy societal norms. It’s the Committee that insists we fit in, no matter what we’re feeling. It’s the reason that neurodivergent people are so reluctant to admit their differences in public and try their best to “play through the pain,” something that isn’t good for them, or for athletes either, really.

I’ve had enough of the Appropriate Committee over the years. Now that I’m properly diagnosed and medicated and relatively stable, I could undoubtedly fit in better than at any time previously in my life. But I dress how I like, even if it’s pajamas. I play my music as loud as I want and laugh or cry along with it if I feel like it. I embrace my weirdness, my differences, and seek out like-minded weird friends who are also living in defiance of the Committee.

Maybe the Appropriate Committee is needed for some places and times and people, like theater audiences or church services. Maybe. But for the mentally ill the Committee is hurtful, and stigmatizing, and unrealistic. We can strive to overcome our differences and sometimes we need to. But sometimes it’s better just to embrace weirdness, differentness, and our membership in the group of the neurodivergent.

And when I despair, I remind myself of songwriter Steve Goodman’s lyric: “I may not be normal, but nobody is.” And I let it blast.

What Kids Should Learn About Mental Health

The stigma and the misinformation surrounding mental illness are staggering.

How many adults believe that depression is “just being sad”? That the weather can be “bipolar”? That you can call yourself OCD because you’re a little too organized? That suicide threats are never acted on? That mentally ill people are dangerous? That prayer, or sunshine, or positive thinking will cure all mental disorders?

We can’t do much about educating and informing the adult population that all those beliefs are false. But we can avoid raising another generation that buys in to these misconceptions – if we start now with mental health education in schools.

Whenever someone proposes this idea, there are common objections. You want kindergartners to learn about schizophrenia. You’ll have impressionable kids thinking they have every disorder you teach about. Discussing suicide will give teens ideas.

Again, those are misconceptions. Mental health education in schools could look like this:

In kindergarten and grades 1-2, part of the health curriculum should be a unit about understanding emotions and how to deal with them. This is already being done when teachers tell kids to “use your words” or “use your indoor voice.” But more could be done in the area of teaching children how they can keep from letting anger, sadness, frustration, and other emotions cause them difficulties. Yes, this may involve techniques that resemble meditation and yes, these may be controversial, but the outcomes will be beneficial.

I also think that young children ought to be taught about autism, though it’s not strictly speaking a mental illness. They will certainly meet autistic children in their classes at this age. Helping them understand the condition at their age level will, one can hope, lead to more inclusion and less bullying of kids who are “different.”

Older elementary children can learn about mental illness in their science or health classes. This should be a unit that covers the basic facts: that mental illness is like physical illness in some ways, that treatment is available, that mental or emotional disorders will affect one in four Americans in their lifetimes, and that mentally ill persons are not generally dangerous.

Middle schoolers can be taught some more specifics: the names and symptoms of some of the most common disorders, the kinds of treatments available, famous people who have succeeded in spite of mental disorders and ordinary people who live fulfilling lives despite them. Speakers from local mental health centers or the school guidance counselor would be helpful.

The topics of self-harm and suicide should be brought up at the middle school level. It is sad but true that children in the middle school age range are affected by both – if not directly, by knowing a classmate who is. And suicide is the third leading cause of death for children ages 10-14. Learning the facts may help students who need help find it before it is too late.

In high school, the focus can shift to human psychology; more detail about serious psychological conditions; and the possibility of careers in mental health treatment, nursing, or advocacy. Topics of self-harm and suicide should be covered in greater detail, with discussions of how suicide affects the families and loved ones of those who die by suicide, how to recognize possible signs that a person is thinking about suicide or self-harm, and what does and doesn’t work when a person shows those signs.

The details of mental health education in schools still need to be worked out. These suggestions come from my experience as a person with bipolar disorder, who began showing symptoms while I was a child. Organizations such as NAMI (National Alliance on Mental Illness) and NIMH (National Institute of Mental Health) provide resources that can help in understanding the need for mental health education among school-aged children.

Understanding mental health is as important for schoolchildren as understanding physical health. Why should one get all the attention and the other virtually none? Mental health education that begins early can help children and their families in ways that will resonate far into the future.

Most adults have little to no understanding of the realities of mental illness. It doesn’t have to be the same for the next generation.

This is a post I published almost exactly a year ago on my other blog, janetcobur.wordpress.com. I thought I would share it here as well, and have more to say about it next week.

Talking to Ourselves

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Recently on Facebook I asked how many of my friends knew the meaning of the semicolon – other than as a mark of punctuation. About two-thirds of those who responded did. The rest either didn’t or had some vague idea but no real knowledge. But I’m pretty vocal about mental health issues and a fair number of my friends have similar problems and difficulties, so that two-thirds figure is likely not representative of the population at large.

Yet I see increasing numbers of t-shirts, bracelets, and other paraphernalia adorned with semicolons and sometimes colorful butterflies or the word “warriors.” But nowhere does it say what the semicolon stands for. For those of you who don’t know, the semicolon marks that place in a sentence where a writer could have stopped, but chose to go on. As such, it has become a symbol for suicide prevention and mental health awareness.

I have a semicolon tattoo myself. I don’t regret getting it. It reminds me, as the saying goes, that my story isn’t over. But when I got it, I also hoped it would be a tool for education – that I could explain to those who saw it and asked what the symbol meant.

Unfortunately, no one has asked.

I’d hate to think that the semicolon has become like a secret handshake that identifies members of our tribe to one another, but leaves out the rest of the world. As stigma-fighting symbols go, it doesn’t seem terribly effective.

The political conversation has become so fraught that no one talks to anyone who doesn’t believe in the same things. And I’m afraid that, like them, we’re largely talking to ourselves.

Self-talk is important – definitely something we should pay attention to and work on improving. But if we really want to fight stigma, we need to talk to other people about it.

I see a fair number of stigma-fighting memes and discussions, but unfortunately, most of them take place in mental health support groups, where the message is not as much needed as in the larger world outside our band of the mentally ill.

Of course, there are organizations such as NAMI, Bipolar Awareness – Stop the Stigma, and Stigma Fighters that dedicate effort to reducing stigma. And they are doing a good, necessary thing.

But what about the rest of us? What can we do to break out of our shells and involve the rest of the world in our cause?

One thing is to question other people’s assumptions when we see or hear them. When you read a post that calls the weather bipolar, answer it. Explain why that’s not a good comparison – that it trivializes a very real problem that millions of people face every day. And when someone assumes that a mass shooter or other terrorist must be mentally ill (or “off his meds”), remind them that those with mental illness are more often the victims of violence that they are the perpetrators of it.

Will people get the message, or will they just dismiss you as “politically correct” or a “social justice warrior”? Personally, I can think of worse names to be called, and many of us have been called them. But just as “retarded” and “gay” are no longer acceptable as synonyms for “weird” or “stupid,” we should try our best to make “crazy” and “mental” and “psycho” and that annoying little twirl of the finger by the temple no longer acceptable as shorthand for behavior that one doesn’t understand. (I still haven’t figured out how “dumb” and “lame,” both ableist language, have managed to skate by.)

What I’m saying is that to fight stigma we need to engage with the world outside. We need to explain why certain uses of language are hurtful and what the truth is about the many people who are affected by mental illness.

I’ve had to smack a few friends on the nose with a rolled-up newspaper when they get it wrong and I try to put my two cents into other discussions that are portraying the mentally ill insensitively. I think about what I’m going to say and even practice it before I speak or press send. (Sounding well-informed and reasonable is the way I want to express my message.) I post my blog entries to “public” as well as to friends and support groups. Sometimes I even talk to my family about stigma.

As a group, we need to do a whole lot better at not hiding from stigma but confronting it wherever we see it. We can live with stigma or we can fight it.

The Compliant Patient

My mother was not a compliant patient. She would have side effects from medication and just stop taking them: The meds gave her sores in her mouth or nauseated her.  And that’s valid. We’ve all had medications that we couldn’t tolerate because of the side effects. But Mom stopped taking them without telling her doctor. Once she went to the emergency room, where they had a list of the meds she was supposedly still on and I had to tell intake, “No, she stopped taking that one. And that one too, I think.” (She was not mentally ill, but that’s where I’m going with this.)

There is only one psychotropic medication I know of (though there may be others by now that I haven’t heard about), where the potential side effects are so horrible – potentially lethal – that patients are advised to stop taking them immediately and get medical help right away.  The side effect is called Stevens-Johnson Syndrome and it is a potentially fatal rash.  I wrote about it a few years ago, (https://wp.me/p4e9Hv-1g)

Other than that one instance, psychotropic medications should never be discontinued unless you have consulted your physician. You never know what withdrawal symptoms lie in wait for you, but they’re bound to be unpleasant, even if they don’t cause you to relapse, which could easily happen. Withdrawal from any drug is not fun; it’s to be avoided.

Nonetheless, I read posts in support groups all the time which say that people have decided by themselves to stop taking a medication, or even all their medications on their own. I have friends who have taken their treatment into their own hands this way.

There are several reasons they sometimes give for giving up medications. One is that the meds aren’t working. What they really mean is that the meds aren’t working yet. Many psychotropics don’t show positive effects until they have built up in your bloodstream, which can easily take four to six weeks. Expecting results in a day or two is unreasonable.

Others stop taking their meds because they “feel better” and think they no longer need the pills. This is just ridiculous. The meds are the reason that you feel better. Your psychiatric condition does not just go away, like the flu, when you feel better. Your disorder may soon come roaring back (or creeping back). And the thing is, when you restart a medication, it sometimes no longer works as effectively. Then you have to start all over with a new prescription and have another four to six weeks of symptoms while you wait to find out if it works or doesn’t.

Still other people simply don’t like taking medications.  This I don’t understand.  People take meds for flu and infections and such conditions and never seem to resent them. Maybe it’s the idea that you could well be – will likely be – on psychotropics for the rest of your life. But lots of people have meds they need for life – insulin, cholesterol meds, anti-inflammatories, asthma meds, thyroid meds, and others. People don’t quit taking those just because they don’t like to take pills or injections.

I think the real reason people don’t like to take their psychiatric meds is that they’re psychiatric meds. There is still massive stigma around the subject of mental illness. Taking medication for a mental illness means admitting you have one, which some people are reluctant to do.

Or they may be giving in to “pill-shaming.” There are plenty of people, perhaps in your own family – and certainly across the Internet – who will tell you that all you need is self-love or affirmations or sunshine or exercise or vitamins or meditation or willpower to banish your mental illness. Funny how they never tell people that sunshine will cure their broken leg or that exercise will cure their breast cancer.

I hesitate to say that I love my psychotropics, but in a way I do. They have brought me out of states of mind that were harmful to me. They have made it possible for me to function and create and communicate. They probably have saved my life.

Occasionally I let my psychiatrist know that I may need a change in dosage or that one of meds is no longer working. I’ve even reviewed with him whether there are any meds I could quit taking (there aren’t at the moment). But I keep taking them faithfully, every day, morning and night.

I need the psychotropics. So I am a compliant patient.

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