The Therapeutic Hug
Posts tagged ‘my experiences’
Bipolar Robbed Me of Reading
I don’t remember a time when I couldn’t read.
Except when bipolar disorder took it away from me.
I was what they call a “natural reader” – someone who learns to read without being taught. Someone who just picks it up out of the air. And for me, reading was like breathing. It kept me going, kept me alive. Reading was part and parcel of my identity. I was never without a book within reach. I read while eating, walking down the hall, going to sleep, riding in a car. (Fortunately, I didn’t get carsick.)
Throughout my undiagnosed childhood years, reading was a way for me and my brain to play nicely together. If I was depressed, I could lose myself in escapist fantasy. If I was hypomanic, I could soar on adventures. And during the in-between times, I had access to unlimited worlds – places, people, situations, ideas, conversations – both familiar and strangely new. Reading was my joy and my solace.
For many years, reading was therapeutic. I could not only lose myself and escape the unpleasantness of my disorder for a time, I could learn more about depression and bipolar disorder, compare my experiences with those of others who struggled with mental illness, discover how medicine and law and psychology and sociology could shine a light on my experiences. I could even (God help me!) read self-help books, which were popular at the time, and learn all sorts of theories and techniques that didn’t improve what was wrong with me.
Books and words were my life. I got degrees in English language and literature. I read for work and for fun. I edited magazines, wrote articles and (occasionally) children’s stories, and worked on textbooks.
Then my brain broke and reading went away.
I had a major depressive episode, which lasted literally years, and during that time I found it nearly impossible to read.
Why? My old companions, depression and hypomania.
Depression made me dull. I didn’t care about anything and found no happiness even in the books that had always been my refuge. I remember picking up a book that I more than loved and had returned to dozens of times, that had shaped my life in many ways, thinking that the familiar words would touch something still buried inside me. But this time there was no magic. Not even interest. The words were flat and dull, mere ink on the page or pixels on the screen. Reading – engaging with an author’s ideas, imagining characters, following plots and dialogue, discovering facts – was beyond me.
And hypomania? My version, instead of bringing euphoria, brought anxiety – an overwhelming twitchiness and fear of the unknown, jumping not just at shadows, but at the idea of shadows, things that had never happened. My attention span shrank to nearly nothing. I could barely read a few pages, not even a chapter, and when I was finally able to get back to a book, I was lost, disconnected.
Now that I have recovered from that episode, I am glad to say, I can read again. I read myself to sleep at night once again instead of crying myself to sleep. I devour entire chapters, keep at least two books going at once (one fiction, one nonfiction), delight in revisiting old favorites and seeking out new authors and genres (YA fiction and steampunk, recently) and topics. I’ve even picked up that beloved fantasy trilogy again and been swept away once more.
Not everything I read is uplifting. At the moment I’m deep into Cult Trip, a horrendous true account of an abusive sex cult in New Zealand. But I can tell when it’s getting too deep and frightening and switch over to Jasper Fforde’s Thursday Next literary fantasy Lost in a Good Book before the awful realities can drag me down.
And I can tell you this: It’s better to be lost in a good book than lost in your own broken brain.
Burnout Ahead
This was first published seven years ago. I’m glad to say that things are better now.
What do you get when you take two people, three doctors, eleven prescriptions, two pharmacies, and an insurance company?
No, wait – I’m not finished.
THEN add another person, two banks, a credit card company, a missing check, and a disputed charge.
Mix in bipolar disorder, clinical depression, and several months of previous stress.
What you get, first of all, is something that rhymes with fuster-cluck, and then a dangerous situation: Two people under pressure, neither of whom can function well enough to find any solutions, running out of psychotropics.
There is enormous inertia. You make a few calls, get a few responses. Fine, you think. That’s taken care of. Except that days later, it isn’t. There are overdraft notices, nearly exhausted supplies of psychotropics, and occasional fits of tears.
So you take another swing at it. More phone calls. More revolving phone trees. More dropped calls. More suggestions that you really need to get someone else to call someone other else to resolve it and here’s a handy 1-800 number that takes you to a department that never heard of you, your problem, or the companies you’re dealing with.
Yes, they all agree. It’s important that you don’t run out of your psychotropics. It would sure be nice if there were enough money in the account to pay the premium for the crappy insurance. It’s a mystery why no one has any record of the complaint you asked them to file.
Another day. Another no check. Another no drug delivery. By now we’re getting into mixed states: immobilizing depression and nail-biting, catastrophizing anxiety.
You look for possible work-arounds. Maybe the local pharmacy can sell you enough pills to tide you over. But, oopsie! Your bank balance just went from -$53 to -$82. And the insurance won’t pay for drugs at the local pharmacy anymore – only through mail order. Which brings us back to D’oh!
This is not hypothetical. This is happening.
What do we do now?
Well, we split up the tasks. I work on the drugs and insurance end, while my husband works on the banking problem. We both hover over the mailbox, waiting for the check.
We take turns with symptoms. Both of us having a meltdown at the same time is not pretty. I’ve seen it. Trust me on this.
We do all we can do and then stop. For the moment anyway. When the pitch of my voice starts rising to dog whistle range and I start sniffling and tearing up, I know I’m just moments away from becoming incoherent, which may demonstrate the need for the psychotropics, but is not actually any help in getting them.
We try to take care of ourselves. Dan can sleep (I can’t), so he does. He buys me comfort foods (fried rice, mashed potatoes). I decide that this may not be the best time to be reading a new, fast-paced zombie apocalypse thriller and switch to a familiar old standby character study.
There’s never a good time for these cosmic pile-ups to happen, but now is unusually bad. The last few months have brought assorted financial and medical troubles (the two being related, of course), plus the death of three elderly pets within a couple of weeks of each other. Dan is dealing with the fact that the house he grew up in is up for sale. I haven’t been getting as much work as usual. Soon, I will have to look into expanding my client base or finding another line of work.
After I get the drugs. And after they start to work. Whenever that is.
Sorry I don’t have anything encouraging or amusing or informative to share this week. That’s just the way it is sometimes. And now is one of those times.
I Want to Go Home to Bed With My Kitties
What Bipolar Disorder Has Cost Me
We lose a lot when we live with bipolar disorder – function, memory, friends, and even family.
But we also lose something more tangible – money. Or at least I did, and I know that a number of others have experienced this as well. Here’s how it went for me.
Work. I quit my full-time office job (possibly in a fit of hypomania). I had a new boss and had told her about my disorder. Her only question was, “What will that mean?” My answer was, “Sometimes I’ll have good days and sometimes I’ll have bad days.” (It caught me by surprise, so I didn’t have a more coherent or accurate answer.) Immediately after that, I began receiving bad evaluations, which I never had before. Was my performance really declining? It probably was, as I was heading into a major depressive episode.
But I wasn’t out of work quite yet. For a while I worked freelance, and pretty successfully. Then my brain broke, and there I was – unemployed. I had savings in a 401K, and we ran through all of that. Then my husband had a depressive episode and we ran through his 401K as well. And the money we got from refinancing our house.
Disability. Sometime in that stretch of time, my husband realized that our money was going to run out. He asked me to file for disability. Many of you know that story. I was denied. I got a disability lawyer. By this time – years later – I was able to work freelance again a bit, and my lawyer told me shortly before my appeal hearing was scheduled that the hearing officer’s head would explode when he learned what my hourly rate was.
Never mind that I could work only a few hours a week – maybe five, in a good week.
Insurance. Then there was insurance. As a freelancer, of course, I didn’t have any. My husband’s good county job had covered us, until he became unemployed too. I’m sure a lot of you know that story as well. No insurance. Huge pharmacy bills, and psychiatrist and psychotherapist, and doctor visits and the odd trip to Urgent Care.
Meds. Then my doctor put me on a new drug which cost $800 a month. I got a couple of months free from the drug company – just enough to discover that it really worked for me and I didn’t want to give it up.
Then, with remarkable timing, the Affordable Care Act (aka Obamacare) came along and we were able to get insurance again. It wasn’t really affordable, though, costing only slightly less per month than the new drug. But it covered all our other prescriptions, too, so we came out a little ahead.
Budget. Since then, that’s the way it’s been going – month to month and disaster to disaster. My work is irregular and I never know how much I’ll get in any given month. My husband’s pay is steady, but meager – a little above minimum wage. We have managed to make our mortgage payments and keep the house, which my husband doubted we’d be able to do when I couldn’t work. I know in that respect, we’re way luckier than many families struggling with bipolar disorder.
Our latest disaster came this week, when our only remaining partially working vehicle (no reverse gear) blew out second gear as well. The money we had borrowed and put aside for major dental work that the insurance wouldn’t cover disappeared with a poof – and still wasn’t enough. We had to borrow more from an already fed-up relative. I don’t blame her. She never expected to have to keep bailing out her grown son and his wife when she herself was past retirement age.
Our Future. I don’t see anything changing. My mental disorder is under much better control, but I know I’ll never be able to work in a full-time 9–5 job again. Job opportunities are few for people our age anyway, despite anti-age-discrimination laws. And I’ve never tried applying for a job where I must ask for accommodations to offset my illness, but I’m sure employers find lots of reasons not to hire people who need those. Again, despite the laws.
So why am I telling you all this? Am I just whining and feeling sorry for myself? Well, yes, I am, but that’s not the point, really. Bipolar disorder takes a brutal toll on our emotional lives, our families, our relationships, and more. It can also put us on the brink of poverty, or in our case, one paycheck and one more disaster away from desperate straits. I know that there are bipolar sufferers, including some of my friends, in much worse straits.
It’s stressful.
And we all know how stress affects a person with bipolar disorder.
Badly.
Owning My Bullying
I have written many times before this on the subject of bullying – and now I have to admit that I have been a bully, too.
Bullying is often seen in stereotypical terms as a larger kid extorting money from a smaller, weaker one, or torturing someone in the locker room with “swirlies” and other indignities. But there are many kinds of bullying. There is physical bullying – the kind most people think of. There is ostracism or social bullying – the stereotype of which is the clique of mean girls or arrogant jocks. There are racist bullying, ethnic bullying, socioeconomic bullying, ableist bullying, sexual bullying, and just about any other type you can name.
Nowadays, one of the most vicious types of bullying, with the most harmful and longest-lasting effects, is cyberbullying. The tools of connection are being used to separate, exclude, and destroy reputations and even lives.
None of those is the kind of bully I was.
I was an intellectual bully. And since I realized that – only recently – I am ashamed.
I am not ashamed of my intelligence or my educational accomplishments. Those were the products of nature and nurture that I had little control over. It was what I did with those advantages that is shameful.
I used my smarts and my vocabulary to squash other students.
It may have started as a defense against the bullying I received – physical and social and whatever else. Intelligence seemed like the only weapon I had, and I wielded it as one. I was taking revenge in the only way I knew how. And that is something I should never have done.
I may not have intended it that way, but every snarky remark, every intellectual put-down, every sesquipedalian word flung back at my bullies carried a message. I was telling them that they were stupid and inferior and that I was smarter – better – than they were.
If that’s not bullying, I don’t know what is. And I’m sure it caused damage to egos and self-esteem, as well as perpetuating the cycle of be-bullied-and-bully that leaves countless perpetrators and victims in its wake.
Later in life, as my bipolar disorder deepened, I turned the bullying inward. I made self-deprecating remarks, snarked at myself, even made fun of myself for being overeducated and pedantic. I thought I had to do these things to myself before someone else did them to me. It was at once a measure of my profoundly low self-esteem and a way to lower it even further.
In essence, I was bullying myself. And I’ve known other people who have done likewise. (For what it’s worth, I’ve since learned that it can be profoundly irritating to listen to a person tear himself or herself down this way.)
Intellectual bullying is a hard habit to break. The words, the ideas, the sarcasm are there for the using. The consequence, of course, is driving people away, sometimes without even realizing it. I have done this and seen it only when looking back at the potential or actual friends lost, the coworkers who thought I was a jerk, the people I’ve hurt.
I’ve been trying to break myself of the habit. Oddly, the Internet helps. It is, as has been noted, true that there are few ways to convey tone of voice in chat or email. There is no sarcasm font. But there are ways to let the recipient know that you do not mean a message literally or unkindly. You can place <snark> after a remark or a 😛 emoji or a sticker that demonstrates you mean well. I’ve even seen people use <sarcasm on> and <sarcasm off> around their messages to make them clearer.
But mostly, I try to guard my speech. I have to install a little censor (or sensor) that says, “Ooh! That’s funny! But is it insulting?” before I make a remark.
I’d rather pause for a second and look like a doof than go back to being a bully.
Who’s Crazy Now? A Guide to Gaslighting
“You’re crazy. I never said that.”
“That’s not the way it happened. You’re crazy.”
“No one believes you. You’re crazy.”
“You’re crazy. You’re just overreacting.”
What do these statements have in common? Obviously, they involve one person telling another that she or he is crazy.
More subtly, though, the speaker is saying that the other’s perceptions and feelings are invalid, untrue – wrong.
And that’s gaslighting.
Gaslighting describes a mind game that emotional abusers use to control their victims. (Gaslight is also an old movie, in which a husband uses the technique to try to convince his wife that she is insane. The victim of gaslighting is usually a woman and the perpetrator usually a man. Of course this is not always true. Either sex can be the gaslighter and either sex the gaslit.)
But what does gaslighting have to do with bipolar disorder? Someone who is in the depressive phase of bipolar – especially one who is undiagnosed – is especially susceptible to gaslighting. The very nature of depression leaves a person wondering, “Am I insane?” To have another person reinforcing that only strengthens the idea.
Back when I was undiagnosed and in the middle of a major depressive episode, I had an experience of being gaslit. My grasp on reality was not entirely firm at the time, both because of the depression and because I was physically, socially, and emotionally cut off from the outside world, family, and most friends. This isolation left the gaslighter, Rex, in a position of control.
I endured everyday denials of reality, like those mentioned above, but the most obvious one – the one that made me aware that I was being gaslit – happened when I suggested that we go for couples counseling. Rex asked if I was sure I wanted to, as he and the therapist could declare me a danger to myself and others and have me put away. That, of course, was not true and I knew it wasn’t, which gave me my first clue that something was amiss.
When we got to the sessions, Rex tenderly held my hand and spoke of how concerned he was about me and how much he wanted to help me get better. In other words, he was saying that I was the crazy one and that he wasn’t. That is the very basis of gaslighting – to make the other person seem or possibly even become crazy.
Once a person recognizes the gaslighting for what it is, she can begin learning to trust her own perceptions again. For a person in the grips of depression or mania, this will not be easy. I know it wasn’t for me.
It took a long time and a lot of healing before I could recognize what had happened, how my circumstances had been controlled, how my perceptions had been invalidated – how I had been gaslit. That was a vast revelation. It was like turning the tube of a kaleidoscope and seeing a different pattern come into focus. The elements that made up my life may have been the same, but the new perspective changed everything.
Having someone outside the situation who can validate your perceptions is an important tool in recovery. Sometimes a friend or family member can perform this function, but mental health professionals who have been trained in the process are often more successful. They are the people we often turn to to tell us that we are not crazy, that our feelings are valid, and that the mind game of gaslighting has affected us.
Getting help for the depression or bipolar disorder is also an important step in escaping the effects of gaslighting. With proper therapy and/or medication, a person’s thinking becomes more clear, accurate, and trusted. Turning off the gaslight is like turning on a different kind of light – one that illuminates your life, improves your clarity of vision, and begins to break through the gloom and despair.
And that light is more powerful than gaslight.
Stuffing Your Feelings in a Box
We all know it’s a bad idea to stuff your feelings, especially if you then pile food or alcohol on top of them.
The thing is, sometimes you need to suppress a feeling, for just a little while, in order to get through a difficult situation. When that happens, I put my feelings in a box.
Here’s an example. My father was dying, and had only days to live. We all knew it. My mother, who didn’t drive, asked me to take her shopping for something to wear at his funeral. “Do you mind if I don’t wear black?” she asked. “If you don’t mind that I do,” I replied.
It was my first encounter with a close family death, and I had to get through this awful, wrenching shopping trip. I had to keep my composure so that my mother could keep her composure. I had to steer her away from a flowered dress, which would have been fine for church, to a navy suit and a lighter blue top, which would be suitable for a funeral but not so somber that she couldn’t wear it for anything else. All while my father lay in the hospital, dying painfully of bone cancer.
My feelings were complicated and I absolutely could not afford to feel them at that time. I had to stuff them in a box and close the lid on them until my mother’s needs had been met. Then I could let them out, in a time and place where it was safe to, in the presence of a person I could trust with those feelings.
When such circumstances arise – and they will, in one form or another – I recommend using a box, one in which the feelings will be out of sight for a while. A box is small; only a few feelings will fit in it. If you think the feelings are going to leak out, you can sit on the lid. Then, when it has served its purpose, you can rip the box open (or gently lift the lid) and feel the feelings. Cry. Rage. Grieve. That’s the important part.
You have to experience the grief or fear or even the crushing weight of guilt in order to come through it and heal.
But why put feelings in a box instead of something stronger? Who wants to feel those negative emotions anyway? Aren’t we better off without them? Shouldn’t you just build a wall around them to keep them from breaking out?
We’ve all tried it. It works for a while. But a couple of consequences go with the practice. First, all of your feelings get trapped behind that wall – the good as well as the bad. When you find yourself disconnected from all your feelings, life is a gray blur. In your depression or anxiety or fear or rage, you may not have had many good feelings. But when you build that wall, you cut off even the possibility of having them.
Second, you’re only postponing the pain. The wall will leak sometimes; your unpleasant feelings will come out some way – in your dreams, around your eyes, in sudden spurts, or trickling back into your everyday life. Worse, the wall may shatter – fail altogether, releasing all those feelings in an unstoppable torrent, only stronger and more concentrated from having been confined. They overwhelm both you and anyone in the vicinity. It’s not pretty. And it’s destructive – to you, your mental health, your healing, your employment, your relationships – to every aspect of your life.
If feelings are behind a wall, you may be able to tell yourself they don’t exist. But if you stuff them in a handy box, you can choose the time and place to open it – and yourself – back up.
Bipolars, Rollercoasters, and Sex
The rollercoaster is the most common metaphor for bipolar disorder. But is it really the best one?
After all, a rollercoaster has long, abrupt downward swoops, and anticipatory highs. (At least the ones I’m familiar with. I won’t go on the ones that turn you completely upside-down. I understand the physics, but no. Just no.) Rollercoaster highs crank slowly, grindingly up. Mania isn’t like that. Boom! You’re suddenly at the top.
Nor are rollercoaster lows like the lows of depression. If they were, the downward slide would not be the exhilarating, thrilling part of the ride, and would not immediately be followed by another high. Instead, the rollercoaster would plod along through a lengthy trough, or maybe a tunnel (though not of love), with no idea of when the next up would come.
Perhaps a seesaw is a better metaphor. Its ups and downs are quick, and you can stay stuck in either position for an undetermined length of time. And a seesaw is all about balance.
But no. A seesaw requires a second person to operate correctly, and that is certainly not the experience of a bipolar person. Our brain chemistry or genetics or trauma alone is enough to get us going up and down.
A pogo stick? The spring gets squashed and then rebounds. But it’s a rhythmic bounce, not one that you don’t see coming until you’re in it. (If then.)
The basic problem with most of the usual metaphors is that they involve fun at some level. Bipolar is not fun. Oh, the mania may be enjoyable – for a time. But the gut-wrenching drop does not make you go whee!
So how about a soufflé? It can rise or fall, and you never quite know which it’s going to do.
Or a computer? It can open up the world, but is going to crash sometime, inevitably when you most need it to work.
I suppose we could split it up. Mania is a fountain and depression is a ditch. Depression is a b&w rabbit-ear TV and mania is streaming with 1000 services. Mania is a battery and depression is a dead battery.
The root of the problem is that no metaphor can adequately explain bipolar disorder. Even Spoon Theory, useful as it is, explains only the effects, not how the disorder itself works. A metaphor may capture one half of the experience – the ups or the downs – but not the reality of both.
If it’s not possible to explain bipolar disorder with a metaphor, why do we so often try to? Because, really, only people with bipolar know what it is like, and the experience even differs from person to person. A psychologist or psychiatrist may understand the mechanisms and the causes and the complications and the medications. But she or he is essentially watching from the outside.
My husband didn’t really “get” depression until he fell into depression himself which lasted a couple of weeks. “Now,” I said, “try to imagine that feeling lasting for months.” He couldn’t, but at least he was closer to understanding.
My mother-in-law, who doesn’t “believe in” mental illness, now has a clue too, since she experienced a profound reactive depression.
Neither of them really “gets” mania.
Maybe the best metaphor is that bipolar disorder is like sex. You can’t adequately explain it to someone who’s never had it. And even when you’ve had either sex or bipolar disorder, you only know what it’s like for you. You can generalize your experience and share commonalities, but basically, every case of bipolar is something a person goes through alone, or maybe alone together, as Jenny Lawson says.
Bipolar disorder.
It is what it is.
Dear Bipolar Disorder
Dear Bipolar Disorder,
We’ve had a relationship for decades now, though it’s one I never chose. To tell the truth, I can’t even remember when we met. Gradually, you just moved in. So I guess we’re stuck as roommates for the rest of my life. You can’t break your lease and I can’t move out. That being said, there are some things I need to talk to you about. We’ve never been friends. We never will be. I have some issues with you; there are compromises we need to make.
I’ll take my meds faithfully if you back off when I do. By that I mean no major depressions of longer than a week and no panic attacks while I’m trying to sleep.
I’ll pay for those meds, as long as you settle down enough to let me keep working and earning money and paying for meds. Just leave me enough concentration to do that and to read, and I’ll be satisfied.
I won’t go to Chuck E. Cheese or Cici’s Pizza or shopping at a mall anytime after Thanksgiving if you will let me go out at other times to other places without getting your figurative undies in a bundle.
I will try to minimize the stress in my life (see above) if you will cut out the physical symptoms when there is stress anyway. You know the ones I’m talking about. Ick. Just ick. I hate cleaning up after you.
And can we talk about spoons? I know you only give me a limited number per day, but it would sure help if I knew what that number was. Is there any way you can be more consistent? If I have to borrow spoons from the next day or force myself to attend to some vital call or lengthy errand despite not having spoons, I promise to spend the next day in bed, just to satisfy you.
Please, if you can, give me some non-anxiety-laden hypomania so that I can go out and enjoy things with my husband and friends. If you agree to this, I will occasionally let you buy things off the Internet, for $20 or less.
And while we’re on the subject of enjoyment, I would appreciate it if you would give me back my libido. So would my husband. I know you don’t take orders from him, but it would be esteemed a favor.
Don’t even talk to me about hurting myself. I won’t listen. No matter how loud you get.
Don’t get between me and my friends. You’ve done that too often already and I just can’t put up with it anymore.
No more screwing with my memories. I’ve already lost enough. You can keep the ones of everything stupid I’ve ever done, but I will not watch when you push play on my internal video playback.
Now that I’ve finally got some self-esteem back, you just keep your claws off it. I need it and you don’t.
No dogs allowed. Especially large Black Dogs.
Oh, and tell your buddy Depression to leave my husband alone.
No love,
Me
Janet Coburn
Bipolar Me 
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