My Experience Only. YMMV.

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.

 

 

 

 

I have actually written quite a bit about the meds I’m on.

I’ve done a whole saga on Abilify – about its price and how impossible it is to get without decent insurance.

I’ve written about how various meds have caused me embarrassing memory lapses.

I’ve written about all the different categories of drugs I have taken, and how long it was before my psychiatrist and I found a “cocktail” that actually works for me.

I’ve written about how it feels when you’re running out of your pills.

I’ve written about how close to electroshock I came when none of the meds seemed to be working.

I’ve written about the side effects I have and haven’t had, and the stupid way psychotropics are advertised to consumers, and natural treatment vs. psychotropics, and animals that take psychiatric meds, and crimes that are blamed on psychiatric meds, and needing a new psychiatrist to prescribe them, and whether psychotropics affect creativity, and being embarrassed when someone at the pharmacy recognized me when I was picking up my meds.

But what I’m not going to tell you is exactly which meds I’m on and what the dosages are. You don’t need to know that.

Here’s why.

I see a lot of comments and questions in online support groups telling what meds a person is on, and asking if anyone else is on the same medication, and what their dose is, and what side effects they have, and whether they should stop taking them or take a different one or a different dosage.

You’d think I have something useful to say. After taking psychotropics in every category you can think of (except lithium), usually multiple drugs at the same time in various combinations, I know a lot about how drugs affect me.

Me.

Yes, we are all the same in having bipolar disorder. But we are not all the same in how we have it.

I have mild to deep depressions, occasional hypomania, which sometimes comes out as anxiety, rapid (or maybe ultrarapid) cycling, and a couple of complete breakdowns. I have never been hospitalized.

But that’s just me.

You may have more dysthymia, more manic episodes, four or fewer cycles a year, no anxiety, or any other combination.

My medications are ones that relieve my depression, calm my anxiety, level my moods, and allow me to sleep. That may not be what you need. And even if you do have the same symptoms, at the same severity, my drug regimen still may not be right for you.

Bipolar disorder, you see, is all about brain biochemistry. And no one knows exactly how their own – or anyone else’s – brain chemistry works. What are my levels of serotonin? dopamine? norepinephrine? I have no clue. My psychiatrist has no clue either. And neither of us has any clue about your brain chemistry.

When I started seeing all the requests for drug information on the support group boards, I was tempted to answer. I even did once or twice. But I found I had only a few things to say that could be helpful. And those apply to anyone and everyone. So here’s the advice I can give:

  1. Stay on your meds. Even if you think they’re not working, they may just be not working yet.
  2. Stay on your meds; I mean it. Stopping your meds without advice from your doctor can be dangerous.
  3. Stay on your dosages. Do not change your own dosage. That’s your doctor’s job. She or he will likely want to ease down the dosage and ease upward on another drug if you’re changing medications. Ask your doctor if you think you need to change dosages.
  4. If you can’t find or get to a psychiatrist, your Primary Care Physician may be able to prescribe your meds. But keep looking for a psychiatrist. They have more training in the specifics of psychotropics.
  5. You can track your side effects, but then report them to your doctor. She or he should have advised you about any really dangerous ones to watch out for.
  6. If you have questions about your medication and can’t see your doctor, ask your pharmacist. She or he may be able to answer some questions about side effects and drug interactions. But not dosages.

It’s been said that time is nature’s way of keeping one damn thing after another from being every damn thing all at once … However, every now and then the damn things gang up on you.

– me, “The Overwhelming Problem,” http://wp.me/p4e9Hv-hy

It’s also been said, by Canadian astronaut and all-around awesome guy Chris Hadfield, that he managed to stay alive in space by always asking himself, “What’s the next thing that might kill me?” If, for example, the most immediate danger were running out of oxygen, the next thing to do would be to check your tank and hoses.

I find that attitude soothing in a way, and helpful in getting through one of those every-damn-thing days. It’s not traditional positive thinking, but it does help you set your priorities.

Today and yesterday and the day before have been examples of every-damn-thing days. I’ve gotten through by asking myself, “What’s the next thing I absolutely have to do?”

It starts when I wake up and can involve the simplest of decisions: Do I take my meds first or do I pee first? Pee first. Pee first is almost always the correct answer and is one of the Mystic Rules of Self-Care.

Do I get dressed or do I eat something? I don’t absolutely have to get dressed yet, because I’m not going out anywhere yet, so eat something. Eat something is almost always the correct answer and is another of the Mystic Rules of Self-Care.

This can get me through the entire day. What is the next thing I absolutely have to do? Get dressed. What is the next thing? Go to the bank and get money. What is the next thing? Pay the power bill. Those are absolutes if I want to have a functioning computer. And I do. Very much.

Next comes a real decision: K-Mart is right next door to where I pay the power bill. Do I stop in and get the loaf of bread I need and maybe some underwear, or do I eat first? I eat first. (See above Mystic Rules.) By the time I finish my banh mi (if I’m out and dressed and in motion, I may as well make the most of it), it’s pouring rain. Do I absolutely have to go back to K-Mart, walk through a wet parking lot, and get that loaf of bread? I do not. I go home. One errand (two if you count the bank, and I do) is a major accomplishment for me.

After I get home, there is no “next thing I absolutely have to do,” so I switch to “What is the next thing I could do?” Say there are three choices: take a nap, watch TV, do some work. Obviously, the work is out. I am spoonless by now. I decide to watch TV until closer to bedtime, then go to bed.

If there is work that absolutely has to be turned in the next day, I get up early and do it when I have a fresh supply of spoons. (After peeing first and taking my meds.)

There is also an element of creative procrastination to this. (See http://wp.me/p4e9wS-ct.) It’s like sorting your tasks into three piles: absolutely, would be nice, and meh. Not that I’m recommending writing them down. That’s not flexible enough. Throughout the day, an event can wander down the progression. “Buy loaf of bread” started out as Category 2, but the rain pushed it into Category 3. I ate the other half of my banh mi for dinner and bought bread the next day. And if I hadn’t had the banh mi, I still had a jar of peanut butter as a back-up plan. Eating it straight out of the jar is pretty depressive, but you do what you have to do when your spoons run out and you still need self-care. (Have I just discovered another Mystic Rule?)

Of course, I’m describing a moderately-functioning day. There are other days when the categories shut down after peeing and meds.

Girl is choosing cosmetics in bathroomIt is fairly widely known that people with bipolar disorder and/or depression have trouble taking a daily shower. It’s not that we don’t know what’s involved in taking a shower, or why it would be good for us to do so, it’s simply that showering uses up a tremendous number of spoons.

Here’s what showering looks like according to Andrew Solomon, author of the now-classic The Noonday Demon:

I ran through the individual steps in my mind: You sit up, turn and put your feet on the floor, stand, walk to the bathroom, open the bathroom door, go to the edge of the tub…I divided it into fourteen steps as onerous as the Stations of the Cross.

I performed a similar exercise in one of my blog posts (Brain vs. Brain: http://wp.me/p4e9Hv-iF) and here’s my version:

First I have to find a clean towel and a bar of soap, get undressed without seeing myself in the mirror, fiddle with the water temperature, wash and shampoo, dry off, find clean underwear, and that’s not even thinking about drying my hair and figuring out what I can wear! Oh, my God, I’ve used up all my spoons just thinking about it! I should just eat Cocoa Puffs and go back to bed.

Now let me say, first of all, that I don’t really like showers. I grew up taking baths and have never enjoyed the sensation of water spraying in my face. But with my bad back and bad knee, getting up from sitting in a bathtub is nearly impossible these days. (Please don’t ask me why anyone would want to sit in dirty water. Everyone says that when I say I prefer baths. I have a nice long soak, steeping in the clean water like a big teabag, and only then wash up and get right out. Used to, I mean.)

To most people, showering is a single act that requires the expenditure of a single spoon. Take a shower; that’s it. But for those of us with invisible illnesses, each separate step may require its own spoon. Take something as simple as finding a towel, for instance. Go to the linen closet, grab a towel and voilà! Only a fraction of a spoon, if that.

But surely you don’t think I have had the spoons to fold and put away my laundry. It is all there in a jumble on top of the dryer. (Who needs a wrinkle-free towel anyway?) I have to root around to find one, and maybe twice if a cat has thrown up on the first one I pick. (They love sitting on clean laundry.)

If I have to go to a business meeting I force myself to use some of those spoons showering and getting dressed and acting respectable. But I will pay for it later, collapsing after the meeting in need of a mega-nap.

Now here’s a little secret I’ll tell you. Most people believe you gain spoons by going out of the house – walking in the fresh air, meeting friends for lunch, shopping, going for a drive (does anyone do that anymore?). But the fact is that, according to Spoon Theory, you get a certain number of spoons every day when you wake up. You cannot gain, buy, beg, borrow, or steal any more, not even by breathing fresh air. You can only spend them.

Given the mathematics of spoons, I don’t spend a single one that I don’t absolutely have to. Not going out? No shower. Have to go out for a loaf of bread or a drive-through meal? Wash up in the sink. If I need a shower between outings, my husband reminds me and facilitates by, for example, rummaging on the dryer for a clean towel and clean clothes or a clean nightshirt.

I need those spoons for doing my work at home in my smelly pajamas more than I do for the ordeal of showering.

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.

There are triggers and then there are trigger warnings. They’re two different things. Here’s a look at which is which.

Triggers are things that set off your symptoms. They are usually fairly common, everyday things that don’t seem to affect others negatively, but that set off a reaction of anxiety or depression in you.

Acute stressI have bipolar 2 with anxiety. As such, I have spells of depression and anxiety that hit for no discernable reason – endogenous, meaning “from the inside.” They have no specific triggers except my own brain biochemistry. I don’t know how long they’ll last, and most of the time I don’t know what will relieve them, except self-care, meds, and the passage of time.

Obviously, since these feelings have no particular triggers, writing about them usually doesn’t need a trigger warning.

With exogenous depression and anxiety – those that come from the outside – there are more often triggers. After a while a person learns what those triggers are and how to avoid them.

Two of my triggers for anxiety are sudden loud noises and loud voices, which means that I will never in my life be able to work in or even visit a Chuck E. Cheese restaurant. Avoiding Chuck E. Cheese is one of my coping mechanisms.

Another is gesturing to let my husband know that his voice is getting loud when he gets angry about politics, for example. Or leaving the room on the pretext of getting a cup of tea when a group of people begin arguing.

My husband knows about these triggers and also helps me in coping with them. He warns me if there is likely to be a loud noise, such as hammering or using a power tool when working on a project. When there is a sudden noise, he reassures me afterward – “It’s okay, honey. I just dropped a plate.”

If I write about my personal triggers (which, of course, I just did), there is likely no need to post a trigger warning. The reader is not actually hearing the loud, sudden noise or the quarreling voices. Even if the reader has the same triggers, he or she is merely reading about them, not hearing them in real life.

The other kind of trigger is very different. It is something that causes a person to have an acute reaction to or flashback of a trauma – rape, sexual abuse, self-harm, suicidal thoughts or attempts, etc. At their worst, reading or hearing accounts of these types of incidents can cause a person to re-experience the trauma. The account triggers a painful memory, which can easily lead to a panic attack or even a total meltdown.

The trigger warning was invented to let a person know that a particularly sensitive subject is about to be discussed and the person may want to skip reading it or wait until she or he is in a safe space before doing so. It’s a little like putting ratings on movies or TV shows so that viewers can choose the level of sex, violence, or profanity they are willing to experience.

A trigger warning is just that – a warning that difficult content is coming – provided so that a person can choose when or whether to read it. To use the earlier example, I do not need a trigger warning at the beginning of an account of a visit to Chuck E. Cheese. I do need one for an account of self-harm.

A trigger warning is not an excuse to avoid a reading assignment or class work. It is not an attempt by a “special snowflake” to sanitize the world. It is a courtesy – a signal – intended to prevent people from experiencing crippling reactions to content that produces only mild discomfort or even no reaction in others. Using a trigger warning when none is needed dilutes the value of the serious, severe kind of trigger warning. I strongly advise against using trigger warnings too freely.

(P.S. There may be triggers for hypomania and mania as well, but I’m not familiar with them. If you are, please tell us about them in the Comments section.)

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.

 

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