My Experience Only. YMMV.

Posts tagged ‘mental illness’

Don’t Tell Me Not to Feel the Way I Feel

“Don’t be sad/angry/upset.”

“Calm down.”

“Smile. It’ll make you feel better.”

“Stop getting all revved up.”

Never in the history of ever has any communication of this sort had the desired effect on a person – especially one with bipolar disorder.

When you offer this sort of “advice,” what you are basically doing is telling the person not to feel the way they feel. Not only is this useless, it’s insulting.

It’s useless because ordering someone to feel a certain way simply won’t work. Saying, “Be cheerful” will not make it so. Emotions aren’t like flipping a switch on command. Even for neurotypical people, emotions are complex interactions of chemicals in the brain. While some people claim – or may perhaps be able to – shift their emotional state at will (from angry to merely annoyed or to neutral), it isn’t easy or natural. There’s a reason that you feel the way you do.

For the person with bipolar disorder, it’s even more difficult – if not impossible – to shift moods at a whim, especially someone else’s. Bipolar is a mood disorder. It affects moods and emotions in a nonstandard, often unpredictable way. Telling someone to alter their own brain chemistry merely by thinking about it is ludicrous.

Even if the bipolar person’s moods or feelings seem exaggerated or uncalled-for to you, that person is having an experience no different than when you feel elated or despairing or fearful. The emotions may even be more profound, less susceptible to alteration by force of will.

But telling bipolar people not to feel the way they feel is not just pointless, it is insulting. You are denying their perception of reality, invalidating their experience, dismissing their concerns, minimizing their problems, discounting their feelings. In effect, you are saying, “I don’t feel the same way, so your feelings are wrong. Change them to match mine.”

Imagine that you have written something – a report, a poem, whatever – and feel good about it. You’ve made your point and done it well. You’ve captured reality as you see it and communicated it in a way you think is clear and effective. Then someone comes along and reads it and says, “This is crap.” They have denied what you feel and believe. And even if they’re right, even if it is crap, they have profoundly insulted you. And, of course, they may be wrong.

Diagnosed bipolar people already know that their emotions do not run the same as other people’s. There’s no need to remind them of that. And bipolar people are generally doing what they can to alleviate their symptoms, be it through therapy, medication, mindfulness, meditation, or whatever works best for them. When you discount their feelings you are discounting them as persons. That can be anywhere from annoying to soul-damaging.

Adam Savage, of Mythbusters fame, sometimes wears a t-shirt that says, “I Reject Your Reality and Substitute My Own.” He is (I hope) talking about substituting a provable, scientific reality for a mythical, uninformed one.

But to go around substituting your own emotional reality for other people’s – and trying to make them agree with you – does a disservice to the people you think you are trying to help.

So, what would be better than saying, “Don’t feel ________”?

How about, “I know you feel _________ and I can see why.”

Or “I can tell you’re feeling _______. How can I help you?”

In other words, start by acknowledging that the other person’s feelings are real. Then ask what the person needs. This lets the person know that you understand his or her feelings and that you would like to help in the way that the person thinks best.

If you know other things that have worked in the past, you could suggest them (after validating the feelings, of course). Would you like me to run a hot bath? Do you need a hug? Do you just need time alone? Do you want to talk about it? Maybe later?

It occurs to me that this is not really news to a bipolar person. The ones who need to read it are the ones who are doing the invalidating, not the ones who feel invalidated.

So, if you know someone like that – a friend or loved one, feel free to copy this post and give or send it to them, if you think it will help. I know it helped me when I figured out what was going on and what my husband and I could do about it.

The Tools for Tackling Bipolar Disorder

When you’re facing bipolar disorder – which is, when you have it, nearly every day – there are some things you can do to lessen its hold on you. But in order to do so, you’ve got to have the right tools. Try to collect as many as possible for best effect.

Shall we take a look at what they are?

The Usual Suspects

  • medication – to tame your symptoms, level your moods, get your brain back in gear, and/or regulate your energy
  • psychiatrist – to prescribe your medications (a primary care physician may also do this)
  • psychotherapist – to discuss with you the issues you haven’t resolved, the problems you still have, and the things the medication can’t do

Self-Care 

The two most important tools you need for self-care are sleep and food. Without either, the body can’t function properly, and if the body doesn’t function, the brain is less likely to function properly either.

Ideally, the food should be nutritious and eaten regularly, but let’s face it, that doesn’t always happen. But you’ve got to give your body something to run on. If there are carrot sticks there, eat them; if there is mac-n-cheese, eat that. If there’s Raisin Bran, well, it’s easy to eat and requires no preparation. Try for at least one substantial meal per day – two is better, if you can manage it.

(Of course, this advice doesn’t count if you have an eating disorder. In that case, see your doctor or psychotherapist or support group.)

Support

Find support where you can – a friend who’s willing to listen, a support group online or in real life. Try for a combination of these and don’t rely on any one of them for too much. Maybe you have a friend you can phone once a week; a support group that meets every two weeks; and an online group or two of people who really understand, with links to helpful articles and blogs. Before you know it, you’ve got a support system, especially if you count your therapist (which I do) or have a supportive family (which I don’t).

Spoon Theory

If you don’t know what this is, see https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Basically, Spoon Theory is a way to measure how much energy you have on any given day – and an understandable metaphor for explaining your symptoms to others, and a shorthand for other people who are also up on the theory. It can also help alleviate the guilt of not being able to do all the things you are “supposed” to do in a day. It’s not an excuse, but an explanation.

Distraction

Let’s face it, it’s all too easy to dwell on your symptoms and how miserable you are. And if you’re at the bottom of the depressive well and your meds haven’t kicked in yet, there may be nothing you can do about it.

But maybe there is. Do you know a person who tells good jokes – or really bad ones? Do you have music you used to play but have forgotten about? Do you know of a TV show that features people whose lives are an even worse train wreck than yours? Do you have a go-to movie that never gets old no matter how many times you see it? (Mine is The Mikado. )

Creativity

If that distraction involves creativity, so much the better. Coloring books and pages for adults have been the trend for a while now. (Some of them are really for adults.) Jenny Lawson draws and also puts together tiny little Ferris wheels. I know someone who can make little sculptures out of drink stirrers or paper clips. The point is, you don’t have to paint masterpieces. Just keeping your brain and your hands occupied is a good idea.

Comfort

Soft warm, fluffy things and smooth, silky things are soothing. They just are. Cats and dogs come instantly to mind (they also provide distraction). But I also have a collection of teddy bears and other plushies that I sometimes cuddle with. These are “comfort objects,” which is an actual psychological Thing. (I wrote about them once: http://wp.me/p4e9wS-k9.) I even took a plush bunny with me when I went to have a sleep study.

Stubbornness

This may be the most important tool of all. Be stubborn. Take those meds, even if you hate them. Eat that egg, even if you don’t feel like it. Go to that appointment, even if will take all your spoons for the day. Call that friend, even if you don’t think a joke will help. Post on your support group, even if you feel you are alone.

We can’t let bipolar disorder beat us. Not when we’ve got so much to beat it back with.

Why Do I Write About Mental Illness?

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

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

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

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

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

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

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

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

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

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

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

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

And that’s why I write about mental illness.

 

 

 

 

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.

 

Getting in Touch With My Hypomanic Side

I know all about how it feels to have depression. For dozens of years, that was my diagnosis and my daily companion – unipolar depression.

In the last dozen years or so, however, I have had to come to grips with the idea that I am actually bipolar – bipolar type 2, specifically. And that I sometimes have hypomania.

It was quite a revelation.

I didn’t believe I had ever felt manic in my life. I couldn’t recall feeling anything but miserable, despondent, and worthless. Although objectively, I was doing well in school and in college, had a few friends, and was never suicidal, in fact I was a depressive mess. Later, as I learned more about mania, I was able to identify some manic – or at least hypomanic episodes that had occurred during that time, but that I had never noticed when they were happening.

When I was hypomanic, I thought I was just feeling what everyone else described as “normal” – happy, able to enjoy activities, functioning pretty well. They didn’t last long, but I didn’t realize how very tenuous and brittle those good feelings were – how they could be shattered by the slightest bump, plunging me back into the old familiar depression. It was even more depressing to think that I couldn’t even do feeling good right.

I struggled along under these circumstances for years, until at last one-half of my problem was diagnosed – the depression half, of course. It certainly was the most noticeable half, the most troubling, and the most disruptive of the problems that plagued me.

My doctor prescribed Prozac and I remember it working pretty well at first – at least when it kicked in after about six weeks of taking it. I can remember feelings of calm, contentment, and enjoyment. It changed my life, and probably saved it. Prozac didn’t alleviate all my problems, but it did let me glimpse a world in which they were not the only things that existed. It’s not too extreme to say that I rejoiced.

But, unknown to me (and my doctor), I was not purely unipolar at that time – or ever. What was happening to the lurking hypomania during while the depression was being treated? Did it disappear? Did the Prozac take care of it too?

No. With the depression more or less at bay, hypomania found new outlets to express itself – as anxiety, for example. I had a spell of being alarmed in the cereal aisles of grocery stores. There was a time (not yet completely gone) when I thought other drivers were swerving into my lane, even when I was a passenger. (That one alarmed my husband too, when I would fling out my arms and gasp or cower, shaking in my seat, at the thought that a crash was imminent.)

My psychiatrist later explained to me that these were manifestations of hypomania that came out sideways, as anxiety instead of euphoria, ambition, desire, exaltation, and assorted addictive or destructive behavior. Trust me to have the less-fun alternative. (Although somewhat less life-wrecking.)

Since that revelation, I have tried to harness my hypomania and use my power for good. I channel my hypomanic binges into writing, for example. I can’t say that it’s always good writing, but at least I get words on the screen that I can fix up later. I usually have several projects – paying and non-paying (like this blog) going at the same time, so I can switch among them as needed. That may be hypomania too.

Sometimes I can even use my hypomanic fits to enjoy myself – have a pleasant lunch out, read a book, do a puzzle, have a conversation with my husband or another friend. Of course, these activities do not always fit in well with my hypomania. At times, instead of simply enjoying these activities and sensations, I am too twitchy and nervous to relax and enjoy them.

I must admit that two of my strategies for controlling my hypomanic spells are naps and anti-anxiety pills, not necessarily in that order. But at least I am getting better at identifying when the anxiety, which I used to think of as free-floating, is actually a form of hypomania. Then a combination of hot tea, silence, cat-petting, reading, and Ativan can bring me back to some kind of stasis.

If not, I just have to accept that I’m having a hypomanic episode and try to stay away from things I can buy using my PayPal account.

Can I? Can’t I? Bipolar and Business

I work freelance at writing and editing, and as many of you know, that life is fraught with insecurity. How much work will I get? How much will I be paid for it? Will the check be enough to cover the mortgage and the health insurance? Anything else, like light and cable and phone, which I need in order to work from home?

Since  I’m bipolar, these questions are laced with more than the usual amount of anxiety. Especially since the progression toward my last major breakdown was a lot of what caused me to lose that 9–5, well-paying job. My attendance became spotty, my attention refused to focus, my relationships with coworkers went downhill, my evaluations took a turn for the worse, and I bailed.

I stayed immobilized for a long time, applied for disability (didn’t get it), then embarked on freelance work.

I’m much more stable now. I’ve have published this blog and my other one for over two years, and proved to myself that I can attend business meetings, at least once in a while. My paying work has built up to the point where we can at least live paycheck to paycheck, but not much more. Time to spread my wings?

So I started looking around for other jobs, in addition to my faithful, steady client who has sustained me for years now. First I asked them if they could send any more work my way. Then I started expanding my platform, as we say in the writing biz.

I joined LinkedIn. And there, one day, I saw a listing for someone who needed an editor. One with exactly my skillset. Precisely my experience. The kind of work I love to do.

But.

It was full-time, likely high-pressured, and 45 miles away (during rush hour). I knew those factors would make it impossible for me to succeed at the job, even if I got it.

But.

I wanted it. I wanted to have back the things I lost after my breakdown – my competence, my confidence, my pride. Oh, and the money too.

But.

Much as I wanted to, I couldn’t let myself apply for it. I didn’t want to trigger the kind of meltdown I had before. I didn’t want another period of literally years when I could do nothing – not work, not take care of myself, not cook, not read. Nothing.

So, with reluctance, I let the opportunity pass by. I went back to my blog posts and my irregular freelance work. I occasionally do some non-paying work for organizations like the International Bipolar Foundation (IBPF), or Sheknows.com, TheMighty.com, and even redtri.com. I lined up a gig editing a friend’s dissertation.

Then, as it sometimes happens, another opportunity appeared – a part-time paid position with a company that already knew my work. Steady work. Pay. Work at home. All this could be mine if I applied, passed the editing test, and was able to work the number of hours per week I rather optimistically said I could. I’ve taken the test (it was two hours long and grueling, the kind I used to give to other people). And now I wait, more or less patiently, never my best quality.

And while I wait, I wonder. Am I even capable of doing half-time paid work at home, plus my other freelance assignments, plus my blogs, plus the novel I’ve written about 1/3 of? Can I do the part-time job (if I get it), without my disorder screwing me up too badly to do it or anything else well? Is hypomania tricking me again? Do I have to give something up to get something better? Will it really be better?

The answer to all those questions is, “I don’t know.”

My disorder surely lost me the 9–5 job I once had. It made me give up the idea of trying for that similar job that seemed “just right.” But at least now I have some ambitions again.

Can I? Can’t I? This balancing act of higher ambitions and lowered expectations is delicate.

 

 

 

 

Blogging While Bipolar: What I’ve Learned

Next month, this blog will be three years old, an unruly toddler of a blog with jam on its face and a sticky plush animal grasped in its fist. Except for one dry spell of about a month during the first year, I have posted every week in both this and my general purpose blog, Et Cetera, etc. (janetcobur.wordpress.com).

My husband often tells me that he’s proud that I am doing this and that I have stuck with it so long and faithfully. (He doesn’t often read my posts, but that’s another matter.)

nightblogWriting while bipolar is not always easy, but blogging has taught me a few things about myself.

Blogging is a substitute for going outside and having a social life. While it’s generally true that my disorder has abated over the years, at least from its worst, I am still unable – or perhaps unwilling is more accurate – to go outside for more than a doctor’s appointment, or a brief errand and lunch with my husband. But I am still connected to the outside world through my blog. I have friends, I have conversations, I get feedback. I have special blogging friends like Bradley, Raeyn, and Dyane. (I also live vicariously through Facebook, but that’s another story.)

I need structure, and blogging gives me that. I used to post randomly, whenever I felt like it. Pretty quickly I discovered that Sunday was the day when my blog got the most traffic, so I made that my official blog post day. Working at home as I do, I tend to lose track of where I am in any given week. Is it Tuesday? Thursday? It’s hard to tell. But having a writing schedule clears that up.

On Monday and Tuesday I pre-write – think about articles I’ve read or conversations I’ve had and jot down a few titles or ideas or URLs. On Wednesday I begin writing. My goal is to have a rough-ish draft by the end of Thursday and a nearly finished one on Friday. Friday and Saturday are for tweaking the writing, selecting a visual, and tagging. Then Sunday, I proof and post. (I also tweet a quote from my most recent post on Tuesday and a quote from an earlier post on Wednesday, plus a “coming attractions” post on Friday announcing Sunday’s topic.)

It’s a loose enough schedule that I can build in actual paying work around it.

For me, blogging and other forms of writing are better than journaling. My journaling quickly turned into whining. It was boring, even for me. I need real content to interact with, whether that be my blogs, a memoir, or the mystery novel I’m working on. Writing engages and invigorates my poor broken brain, giving it something to do other than wallow or turn to mush.

Even when I think I can’t write, I can still blog. Back when I was able to work full-time, I wrote and edited for magazines and textbooks. I used to boast that I could write 1000 words on anything. Blogging is more forgiving. I can stop at 500 words if that’s all I have to say. I can pick my own topics instead of writing to order based on someone else’s priorities. And that schedule I mentioned? It’s not an actual deadline, so I don’t have to worry about it whizzing past. When the pressure’s off, I can almost always make my Sunday goal.

Blogging validates me. I have two degrees in English (one from a pretty classy university) and worked in educational publishing for about 20 years. Then my brain broke and it all went away. Now that I’m writing regularly, I feel that in some way I’m using both my education and the skills I’ve built up.

By blogging, I prove to myself that bipolar disorder may have taken away some parts of my life, but it can’t have everything.

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