Living with Bipolar Disorder

Part I: Introduction

I have Type II, ultra-rapid-cycling bipolar disorder.  I have been living with it almost all my life, but I was not diagnosed until I was 33, nearly twenty years after it all started.

During this period, bipolar disorder put me through hell. I went through periods of months and months of mental pain, nearly committed suicide twice, and went through long phases where I was barely functional.  I decided – fairly rationally – to die twice, because I could no longer tolerate the mental pain.

Fortunately, I didn’t, and after five psychiatrists was finally diagnosed correctly.  Today, thanks to medication, I have no symptoms, and am living (thank goodness!) a bipolar-free life. I feel like I’ve been released from hell.

I wanted to write about my experiences in hopes that it might help someone else, either someone living with bipolar disorder or someone whose loved one is suffering from the disease.  There is a lot of social stigma associated with bipolar disorder – with any mental illness – and I feel it’s important to stand up and claim the illness, to say, “Yes, I have bipolar disorder – and what is wrong with that?” I want people to know that bipolar disorder is a physical ailment that is treatable.  Because it is.

So here is my story.

Part II: In the Beginning

It is hard for me to pick out when bipolar disorder first entered my life.  I don’t remember my early childhood well enough to know for sure, but it was clearly there by the time I entered high school, so I have been living with it since at least the age of fourteen or fifteen.

Not that I knew that, of course.  All I knew was that I went through phases of having lots of energy, followed by periods of intense mental pain, where I would have to grit my teeth, avoid painful interactions with other people, and try to behave normally.  It didn’t occur to me that this was abnormal – it had been happening as long as I could remember, and besides, I was an adolescent – everything was changing and all my friends were going through teenage angst as well.  Being depressed and suicidal wasn’t anything particularly uncommon; it was part of growing up.

Or so it seemed.  Anyway, I was doing well in school – spectacularly well, in fact, the classic talented overachiever – so neither I nor anyone else thought anything was wrong.  And my parents were fighting a lot, both with each other and me, so nobody was happy.  I finished high school and took off for college one year early, partly because all my friends were graduating, partly because I was convinced I’d commit suicide if I stayed.  At the time, that seemed too melodramatic to tell anyone.

I had probably five or six flare-ups while I was in college – it’s difficult to pick them out specifically because my particular type of bipolar disorder is one I lived with daily.  If I did something wrong, I got fleeting images of being tortured – a knife thrust between the bones of my forearm, stabbed in the back, opened up and skinned alive.  It didn’t particularly occur to me that there was anything wrong, because it was nothing unusual.  I’d been living with this all my life.

I would also freak out about every four to six weeks – get involved with a major project, work on it day and night for a week or so, and then crash and burn, hiding in my room for a week or two.  During this period I would be nearly nonfunctional – I felt like there was something invisible in the room threatening me, concentrating on anything was painful, and I could only tolerate being around certain, “safe” people.

Most of this was stuff I could cope with.  But I had some narrow scrapes.  My freshman year was extremely difficult, partly because I didn’t get along with my roommates, partly because my parents started divorce proceedings almost as soon as I was out of the house.  I remember having highs and lows in quick succession.  As soon as I had recovered from one low, I would have another argument with my mother (father, roommate) and it would start all over again.  Although I kept my grades up, I spent most of winter quarter as a miserable basketcase.

My sophomore year was better, right up until a friend and fellow student died, tragically and uselessly, at the end of the year.  I sank into a deep depression, and applied for an exchange program in Hungary, thinking that if I committed suicide there, people wouldn’t miss me quite as much as if I’d been physically present at school.  I barely scraped through four months of serious depression, but since my grades stayed good, nobody noticed.  I finally came out of it and returned home.

After that it was the usual ups and downs until senior year, when I was so stressed out that I put a knife into a door twenty-seven times and showed up shaking in the Dean’s office.  Fortunately he was quite understanding (Caltech students are not exactly known for their mental stability, so this was not particularly unusual).  But it was at this point that I finally got into therapy.

This turned out to be a literal life-saver.  Partly it was having a trusting relationship with a sympathetic adult, which was helpful after years of family infighting.  But it also taught me something that would prove extremely useful in future years: how to notice, and think, about my moods.

Part III: Learning to Cope

Most people don’t notice their moods: they believe whatever they are thinking is reasonable at the time, even though it can easily be colored by their mood.  A stressed-out person will naturally think of more things to be stressed about; an angry person will tend to overreact to the slightest annoyance; a sad person will fail to notice reasons for joy.  This isn’t particularly harmful most of the time, because for most people, their emotions stay within a pretty normal range – not too high, not too low.  For people with a mood disorder, however, it can be lethal.  If you are mortally depressed and don’t realize that this is biochemical, not “rational”, it’s easy to think of all the reasons you should commit suicide.  Conversely, if you are “flying high”, it’s easy for your impulses to get out of control, overspend, etc.

What I learned from therapy was to watch for, and compensate for, my mood.  I examined the pattern of my mood swings and realized that, before a period of lows, there would typically be a few days of high energy, being happier than usual, and plunging into projects head-on for many hours a day.  I learned to recognize when I was starting to go into a “high” phase, and “cool my jets” by relaxing, meditating, etc. when I really wanted to jump for joy.  Often this would stave off the resulting low.

I also learned to watch for behavioral triggers.  When I started doing things like yelling at the cats, and getting frustrated by minor things, an alarm would go off and I’d realize that I was entering a “low” phase.  I would go meditate, try to relax, and most of all hang onto the understanding that the world was not that bad, the mood was temporary, and this too would pass.

I described it to a friend like this:

“There’s a death-spiral you can get into.  You get stressed, and then you start thinking of all the other things that could stress you out.  That gets you more stressed, and you start thinking about all the things that are wrong in your life, and because you’re stressed, even the smallest thing seems overwhelming.  It’s easy to wind up feeling like you just can’t cope and want to go hide under the bed.

“What I’ve been trying to do is recognize when I’m stressed, and actively refuse to think about things that will stress me out more.  I’ll tell myself that this is stressed-out thinking, that things aren’t as bad as they look, and that in another few hours or days I’ll feel better about the whole thing.  Right now I’m in no shape to deal with things, but I will be – later.”

These are obviously good ideas even for people without a mood disorder, but for me they were vital.  If I didn’t want to wind up gibbering under the bed, I had to learn to control my mood, and prevent it from intensifying when things got bad.

Part IV: Crisis

At the end of my first year of graduate school, I hit a crisis.  I had been pretty isolated, having no friends in graduate school, a roommate that I didn’t get along with, and having just broken up with my boyfriend.  For the first time, I was struggling academically, not because the work was more difficult than in college, but because I just couldn’t seem to think.  (I now recognize that I was suffering from a months-long bout with bipolar depression.)  After failing one of my graduate exams and missing the other due to illness, I was looking at leaving graduate school – in a deep, deep recession.  I had no idea how to find a job, and thinking about it made me even more depressed.  I felt completely overwhelmed.

And odd things were starting to happen.  In addition to the images of being tortured, my daily thoughts were starting to repeat all the things I’d done wrong. It was like having someone in my head constantly reminding me of all my mistakes – not just the recent ones either, but dating all the way back as far as I could remember.  I was having generalized mental pain, like having all my mental skin taken off with sandpaper, and a feeling of being threatened all the time, like there was an invisible thing in the room that might come after me if I did the wrong thing.  Strangers and anyone I didn’t trust became very painful to deal with, and I avoided being out in public as much as possible.  I had constant suicidal impulses – if I was driving a car past an overpass on the freeway, I would have random urges to crash the car into a concrete support, or if I were walking across the bridge, I would have an impulse to jump off. I avoided tall places and tried to stay off freeways.

Not surprisingly, after two straight months of this, I told my therapist that I couldn’t deal with this anymore.  She suggested that I check myself into a mental hospital, and I proceeded to do so.

The hospital was an eye-opening place for me.  I didn’t have anything to do, or anything to distract me from thinking about my life.  I spent four days relaxing on the grounds, starting medication, and thinking about what was important.

On the fourth day, having thought things over carefully, I decided to die.  This was different from my suicidal impulses.  I had simply had it with living, had it with dealing with graduate school, had it with spending every day in acute mental pain.  It was like a light had gone on: I didn’t have to deal with this! It wasn’t worth it!

I told my therapist about my revelation, and she promptly moved me to the acute care, aka the locked ward.

Here I had more time to think about things, and since someone was checking in on me every fifteen minutes, committing suicide was more difficult.  Not impossible – I had thought of three separate ways within fifteen minutes of arriving in the locked ward – but harder.  And there was always someone to talk to.

I did more thinking over the next few days.  As the medication started working, the mental pain lifted a bit, the never-ending tape of my misdeeds stopped playing, and I started to feel that living might be possible.

I examined my life.  I had been trying to live up to my record as a prodigy, trying to keep up academic standards and putting a lot of pressure on myself to do well in graduate school while coping with major depression.  I realized that, as much as these things mattered to me – and they were the things I was most proud of, the things I had always valued myself for – they were things of the past.  Living my life with those values was literally killing me, and if I wanted to live I would have to scrap my life and rebuild.

After two weeks I was out of the hospital, medications controlling the worst of the depression, and ready to face rebuilding.

Graduate school was out.  Mathematical thinking had become very painful for me – a side effect of the depression – and I went in to the Dean’s office, told him I needed to leave for medical reasons, packed my things and went home.

I thought about what to do next.  I was still fragile. My grip on living was very tenuous, and I worried a lot about the suicidal impulses.  My roommate took this opportunity to kick me out, leaving me no job and no place to live.  I took advantage of my former college house (which was like a frat) and moved in temporarily, over the summer.  Here I was surrounded by supportive people, and always had someone to go to if I needed to talk.  I couldn’t think of where to work. I had graduated into one of the worst recessions in recent memory.  Having nothing better to do, and thinking that it was one of the happiest places I’d seen, I applied for a job at Ben & Jerry’s, scooping ice cream.

As it happens, that was one of the best things I could have done for myself.  It was a humble position, and, at least in theory, a big comedown for a graduate of one of America’s most elite universities. But I wasn’t worrying about this right now.  I was worrying about survival.  I felt capable of working there – there was very little pressure to excel, it was fun, and the customers and fellow scoopers were mostly happy people.  It was a pretty welcoming place.

My parents, of course, were worried – both that I would wind up scooping ice cream forever, and about the depression.  I told them, “This is what I’m capable of right now.  I can’t do anything stressful, I can’t really think straight.  It’s possible that later, I’ll be capable of more, but this is where I am right now and it’s what I can do.”  They were supportive – I think the episode in the mental hospital scared them – and helped me pay my medical bills, and for my therapist.  Thankfully.

I worked at Ben & Jerry’s for two years, and then slowly moved back into the mainstream.  I became a technical writer, then moved into management.  I moved to the San Francisco area and became a high-paid project manager.  I weaned myself off medication, and learned to keep myself in balance better.  I was always very clear about things: my first priority was survival, and if my career got in the way, I would sacrifice it in a heartbeat.  But for the first time, it wasn’t necessary.  I had survived an emotionally difficult childhood, and a bout with major depression, and I could go on to live my life as a normal human being.

Or so I thought.

Crisis, Part II

In 2001, at the bottom of the dot-com bust, I got laid off.  Two weeks later, my boyfriend dumped me.  I was again at a new low, and I felt the familiar symptoms closing in on me.  Suicidal impulses, the eternal tape of my misdeeds, mental pain.  I didn’t know what to do.  I was fairly certain I would die if I didn’t change something, so I packed up my bags and took off for a six-month trip through Southeast Asia.  This was possibly the best experience in my life, and I enjoyed it greatly.  It probably saved me from a serious bout with bipolar disorder, and since I had the money, it was worthwhile.

After I got back from Southeast Asia, however, things got worse.  I still couldn’t find a job.  (Silicon Valley was in the middle of its worst bust since the Great Depression.)  I was in a serious bike accident in July and needed reconstructive knee surgery.  Stuck on a couch for a month, I was unable to get the exercise that had been stabilizing me, and the bipolar disorder struck in force.  This time I recognized I was in trouble early on, went to a psychiatrist, and was FINALLY diagnosed properly. Not with major depression, but with Type II ultra-rapid cycling bipolar disorder.

The diagnosis was devastating.  Up until then I had thought of myself as having acute bouts of major depression, with some mental stability issues, but basically “normal”, something that could be cured.  Finding out that I had a permanent, lifelong disorder – in short, that I was going to be coping with this for the rest of my life – was overwhelming.  I researched Type II ultra-rapid-cycling bipolar disorder on the Web and discovered that it was one of the most difficult types of bipolar disorder to treat, and that the mortality rate was very high – over 25% in some studies.

Meanwhile, I was experiencing worse and worse symptoms from the bipolar disorder.  I would have days when I didn’t have the mental strength to eat, because I just knew if I ate something terrible would happen.  I was getting almost continuous images of being tortured, I couldn’t deal with strangers, I was getting impulses to kill myself almost every hour.  It was pure mental hell.

My psychiatrist wanted me to commit to her that I would call her if I felt like I was going to commit suicide.  I refused.  I said, “I don’t want to live this way.  I’m not worried about committing suicide if I don’t want to – I’ve been living with suicidal impulses all my life – but to me, this is about quality of life.  If I decide that it isn’t worth it – and I don’t know yet how that will come out – I don’t want you or anything else that will bind me to life.  Right now, this life I’m living isn’t worth living.  If I have to live the rest of my life this way, I’d rather die.”

She dropped me as a patient, just like that.  Two other psychiatrists declined to treat me.  I persevered, because I really did want to live, just not with this much mental pain – and finally found a fourth psychiatrist who would treat me.  I also found an acupuncturist – and this was the turning-point – who was willing to treat me for free, and who could stop the pain for days at a time.  When I started feeling like I couldn’t take it anymore, I would go to her, she would do another treatment, and I could get relief for a few days.  This, more than anything, saved my life.

After some months, my fourth psychiatrist and I found a medication combination that worked.  The symptoms went away, and for the first time I discovered that some of the things I’d been living with weren’t a part of normal life.  I stopped getting visions of being tortured.  My moods stopped weaving between hypomania and depression.  (I didn’t have to think about them anymore!)  People became easier to deal with.  I could keep a steady boyfriend without experiencing mental pain at his presence.  The suicidal impulses stopped.  I had never lived without them, and was amazed when they went away.  I had thought they were simply part of normal life.  (In fact it wasn’t until I was thirty-four and FINALLY asked a friend that I had any idea that visions of being tortured didn’t happen to other people.  It had been going on all my life.)

Finally, Free

Finally, I was stable.  For the last six years, I’ve had no symptoms of the bipolar disorder. I have two medications, Lamictal and Abilify, that together keep things in check, and while I’ll be taking them for the rest of my life, that doesn’t bother me one bit.  In the course of nearly twenty years undiagnosed, I’ve had plenty of time to examine life with bipolar disorder.  It is very clear to me that it’s a medical disorder, because it disappears so dramatically with treatment, and also that, while I can mostly manage without meds, my quality of life is dramatically better when I’m taking medication.  Put simply, dealing without medication is a huge mental hassle, and a source of stress, and I don’t want that in my life.

I also don’t want the shortened lifespan that comes with not taking meds.  Bipolar disorder has nearly killed me twice, and that’s enough.  I don’t ever want to go through a third round.

I don’t need to prove I’m tough – I’ve already been through more hell than most people experience in a lifetime.  If I weren’t one tough cookie, I wouldn’t be here.

But what I want is quality of life.  I want to live my life without having to deal with visions of being stabbed, shot, without constantly remembering the things I’ve done wrong.  Those aren’t part of me.  They’re part of the bipolar disorder, and I don’t want them in my life.  So I am grateful for medical science, for the medications that keep me symptom-free.  For the last six years, I’ve lived a completely normal life, and I’m not only grateful, but ecstatic.  My long battle with bipolar disorder is finally over, and I have won.

Thoughts on Bipolar Disorder

I am very grateful for what I have.  I’ve lost a lot to bipolar disorder, but it could have been worse.  If not for the kindness of many people – the friends who let me stay with them when I couldn’t afford housing, the nurses at the mental hospital, the acupuncturist who treated me for free, my mother, who paid my medical bills when I couldn’t,  literally dozens of people – I would not be here at all.  If not for modern medical science, which has advanced dramatically over the last two decades,  I would still be struggling with the question of whether life is worthwhile.  And without my own love of life – and I love it, as only someone who has nearly died can – I would not have survived.

It is easy to think about all the things one has lost to this disease.  I choose to look at it the other way.  I am not going to say that bipolar disorder is a blessing, because it isn’t.  It’s a terrible disease that takes a horrible toll on its sufferers and the people around them.  But now that my struggle with bipolar disorder is over, I can see that it has enriched my life in some ways:

1. I appreciate life more.  To me, I died when I was twenty-two, in my first bout with bipolar disorder, and was brought back by the kindness of strangers.  To me, every day is a bonus, and I greet it with joy.
2. Most people take mental health for granted.  I do not.  The gift of having normal emotions is a huge one, and one I am grateful for every day.
3. I have learned to prioritize.  My health, physical and mental, comes first.  All the trappings of ego – career success, wealth, and admiration – are discardable.  What is important is for me to enjoy being myself, to accept myself for who I am – which has nothing to do with how rich and how admired I am.  I’ve been an ice cream scooper, and I’ve been a highly paid high-tech professional.  The only difference is that my life is more comfortable with more money.  It does not change who I am, or what is important to me.  Many people don’t see this, and make themselves miserable over nothing.  (I have a friend who spent four years being depressed and bitter because he was not a vice president in his company.  He couldn’t see any of the ways in which he was blessed, because he had his eye fixed on his ego, not the important things.)
4. I have learned to accept myself.  One of the hardest parts of bipolar disorder is the way it cripples you mentally, and teaches you to distrust yourself and your feelings.  In the course of learning to cope with bipolar disorder, I had to accept that on some days I would be enormously productive, and on some days I would be gibbering under the bed.  I had to learn to love myself in both phases, and to accept that both the gibbering incompetent and the virtuoso were both me.  This has stood me in good stead during my years of living without bipolar disorder, because it allows me to accept myself regardless of how a given day goes.  I have my ups and downs, but I accept myself (rather than berating myself) with each day.  This is a great gift.
5. I am incredibly, incredibly grateful for life.  It is such a joy, even on the mundane days.  And because I do not take it – or mental health – for granted, I can see all the many ways in which I am blessed.  Many people focus only what they don’t have, and that makes them much less happy.  I see what I do have, and that makes all the difference.  I live in joy.

In Finis

If I could say just four things to people with bipolar disorder, they would be this:

• There is hope.  Modern medicines are getting better and better.  I could not have been treated effectively twenty years ago, but today there are literally dozens (if not hundreds) of medications that treat bipolar disorder.
• Try medications before you run out of strength, and try to keep that strength long enough to find something that will stabilize you.
• Take medications if you need them.  Taking medications has nothing to do with your mental strength, and it has nothing to do with “needing a crutch”.  Bipolar disorder is a medical condition which is treatable – and refusing treatment is about as illogical as trying to manage a broken leg without medical treatment.  Other methods – therapy, meditation, exercise – can help, but there is nothing wrong with seeking medical treatment as well.
• There is nothing wrong with you.  Mental illness is not laziness, not weakness, and not “being crazy”.  It is a physical illness with physical causes.  There is still a lot of stigma associated with mental illness, but it is an unjust one, and one which I hope will someday evaporate.  While you do have a physical disorder, which needs treatment and attention, the highs and lows are the product of the bipolar disorder – not a flaw in your character.  Be, and accept, who you are.