If I exorcize my devils, well my angels may leave too

I like New Year’s Eve better when I treat it as a contemplative holiday. I always felt so much pressure to do something fun! and get really drunk! Since I can’t drink now there’s even less of a reason to do the festive thing, so last night I hung out with one friend. I was asleep before midnight.

As the year drew to a close I began to think about how I would characterize 2007. It was a hard year. 2005 and 2006 were hard too, but in different ways. In 2005 I was under a great deal of academic pressure, then saw my marriage collapse. In 2006 my father died, I suffered a romantic disappointment, and then later, once my coursework was done, I just sort of ground to a halt. 2007 was hard for reasons you know about if you read this blog regularly.

I’ll always remember 2007 as The Year of the Correct Diagnosis. Realizing that I have bipolar disorder was a large part of what made the year so hard.

It’s hard to overstate the importance of the diagnosis. Not only because it means I now take drugs that I can mostly tolerate, as opposed to the purely antidepressant tack, which was horrible and harmful…but more because it changed the way I look at my past, my present, and my future. And it has instigated a sort of identity crisis which has left me wondering who I would be without the disease.

I’ve struggled with depression my entire life, but in the past few years it has really hindered my ability to function. It was a very lonely state, too, because it was mania and depression at the same time — serious agitation, racing thoughts, anger, obsessiveness, inability to concentrate, poor decision-making powers…etc — and no one I talked to, not even the people who said they had experience with depression, understood what I was describing. Some people expected a higher level of mood or a higher level of functioning than I was capable of, and when I shut down, withdrew, became catatonic, they became angry at me or cut me off. Other people’s accounts of depression seemed so different from what I was experiencing. My situation seemed so much worse than theirs. Whenever anyone tells me now that they understand what I’m going through because they’ve gone through it, I want to ask: how many broken marriages? How many academic drop-outs? How many hospitalizations? How many times on social assistance?

Toward the end of 2006 and at the beginning of 2007, I started to see clearer patterns to the depressions which made it easier for me to identify the triggers that were likely to send me spiraling downward or bouncing up and down. Certain kinds of social situations, for example, especially big groups of people, and even more especially, when alcohol was involved. Getting little sleep. Stress. Caffeine. I came to feel apprehensive or even a little alarmed on the rare occasions when I felt high, because I knew it was just a matter of time until I crashed horribly.

So I went off caffeine, tried to maintain as regular a life schedule as possible, and avoided the triggers. I was basically practicing the the kinds of things that bipolar patients are advised to do by practitioners of social rhythm therapy. I still felt like crap, though, so I started seeing a psychiatrist and luckily for me, he was a very intelligent and observant psychiatrist. He started out by assuming I was depressed, and put me on antidepressants. But when I described how they made me feel, and when he saw the manifestations of my turmoil, he said, maybe you have bipolar, let’s do this instead.

“This” was antidepressants plus an atypical anti-psychotic plus a benzodiazapine. The side effects at times are difficult to manage, and I feel only marginally better than I did last year, but during my last appointment he asserted again that he was sure that the meds were working and that I should stay on this basic regimen with minor adjustments here and there.

Once I was diagnosed I started reading about bipolar disorder and the more I read about it, the more convinced I was that this is what I have. Accepting that I’m bipolar is a big deal in and of itself. Years of misdiagnosis, ineffective treatment, and arrogant psychiatrists who didn’t really listen to what I was telling them made me very sour on psychiatry as an institution. I’m still sour on it, and think that there are some serious philosophical problems with the way psychiatry views people (a topic for another day — in fact, it was the topic of my Master’s thesis in Philosophy), but my problems are clearly not simply a matter of growing up in a fucked-up environment.

It’s not easy to accept that you have a psychiatric illness of that seriousness. There’s such a stigma attached to bipolar disorder — how many times have I had to listen to make people make offhand and dismissive remarks about “bipolar” people, where the word is used as a catch-all term for a cluster of vaguely-defined but very definitely negative qualities. As far as stigma goes, I’d rather have bipolar than schizophrenia or borderline personality disorder, but it still hurts to think that the disease all by itself makes me bad, makes me into someone that others should avoid. And it’s very painful to think that my personality, my very self, is diseased and defective.

Once I accepted the diagnosis, however, many things about my life began to make sense. It explained the huge fluctuations in functioning, from over-achieving, creative and inspired, to withdrawn, angry, and blocked. The fact that it’s genetic explained my crazy father (himself misdiagnosed I am convinced) and his alcoholism. It explained why years and years and thousands of dollars in therapy did jack shit for me.

But I wonder whether bipolar doesn’t also explain my achievements.

One of the things that really struck me when I went on Facebook was how differently my life turned out when compared to the lives of those I went to elementary and high school with. Almost none of them even got bachelors’ degrees. Almost none of them left Hamilton, despite having class backgrounds that were better than mine. They all came from working class immigrant families, whereas I came from a working class immigrant family that took a turn for the lumpen in the very early eighties.

Nothing about my background would suggest that I would end up highly educated, articulate, and worldly. My father died illiterate, and my mother had a grade nine education. There were books in our house but my mother never read to us. My older brother is autistic; my younger sister never finished high school and has never worked an over-the-table job. I didn’t even know anyone whose parents were professionals until I went to university.

From a sociological standpoint, it’s kind of unlikely that I would end up where I did, especially given how stressful and painful the journey was. Why am I the freak? Where did I get the intelligence, the scholastic aptitude, and ambition (such as it is)? How did I end up in New York when almost everyone else stayed in Hamilton?

I now think that the intense depressions have been a major motivator for me to try change things about my life that I was dissatisfied with. It made me drop out of high school a number of times (which I actually think was a positive thing in retrospect because it gave me time to read the things I wanted to read and allowed me to be self-directed). I couldn’t tolerate living with my family so I left. I didn’t have any strong attachments to my family or my town, so it felt perfectly natural to go to university in another city. During a very serious depression in the early nineties, a guy at a suicide prevention hotline suggested I break out of it by dropping out of school, taking the rest of my student loan money and going to Europe. So I did. Best advice I ever got.

In general my constant dissatisfaction with my self has led me to try to make myself better. A better student, a better language-learner, a better photographer.

The depression motivated me to travel, but once I got to the destination the disruption in my circadian rhythms, coupled with hyper-stimulating environments and increased sunlight made me manic. I look back at that four-month backpacking trip, as well as the first year I spent in the Middle East and realize that I was hypo-manic. I did things that I think now were reckless, but at the time were just crazy fun.

I’m not sure to what extent I believe the stuff I wrote above, about the bipolar being responsible for the the things I can be proud of in my life. Cognitive dissonance is no doubt at play: the thought that I just suffer for no good reason is too horrible to contemplate, and when I go down that road, that’s when I start asking what the hell the point of living is. If I can forge some meaning out of those horrible depressions it makes it a little easier to soldier on, and makes me hate myself a little less.

Lost years

I’ve been feeling better lately — not quite as agitated or addled, less troubled by persistent unwanted thoughts. I still have bad days, and I still feel that old dread when my mood is up, knowing it will crash the next day, but on the whole I am functional rather than dysfunctional.

In an effort to better understand my condition, I’ve been reading a fair amount about bipolar disorder. Recently I bought a book called The Psychology of Bipolar Disorder: New Developments and Research Strategies, which is a somewhat dense read, meant for clinicians. The introductory overview was sobering. Reading it, I learned that:

Just under a half of patients first diagnosed as suffering from the disorder relapse within a year of recovering from their symptoms. Even when in receipt of adequate prophylactic medication, about three-quarters of patients can expect to relapse over a five-year period. Moreover, most individuals with the diagnosis continue to experience significant levels of subsyndromal symptoms in the periods between episodes…. Not surprisingly, quality of life in bipolar patients is poor, even in comparison with patients suffering from unipolar depression. It has been estimated that about a third of bipolar patients attempt suicide.

So the prognosis is grim even when a person’s been properly diagnosed and treatment is working. But a big problem with bipolar is that it often goes undiagnosed for many years: recently I read about a Harvard University study which “concluded that it may take an average of 12 years for bipolar II patients to get the proper diagnosis and treatment, if the patient survives the lag time.” People usually see the doctor when they’re depressed, but not when they’re manic or hypomanic, leading doctors to diagnose them with unipolar depression. I was first medicated for depression when I was 14 years old, and I finally got a diagnosis of bipolar disorder this year…so the lag time in my case was 22 years.

But the statistic I keep dwelling on is this: “[I]ndividuals diagnosed with the disorder in their early 20s, in comparison with healthy peers, are likely, on average, to lose 14 years of productive activity”.

When I look back on my life, there have been many years of lost productivity, punctuated by years of very high productivity. The pattern is now very clear to me and really cements my belief that bipolar II is the correct diagnosis.

I was a melancholy kid, introverted, extremely self-critical, sensitive. I was also an excellent student. I aced my first year of high school, when I was fourteen — I got the highest grades in many of my classes, and also participated in extra-curricular activities like school plays and the debating team.

But in the fall of grade ten, I got depressed and shut down almost entirely. I stopped going to school and my mother couldn’t force me to go — I just stayed in my room all day reading novels. Luckily, my teachers and the principal were positively disposed to me because I had done so well the previous year, so we worked out an arrangement where I’d do my work at home and hand it in every couple of weeks and then write the final exams: that way I didn’t lose any credits. In the second semester the depression lifted somewhat and I was able to attend school as normal.

But after that the debilitating depression hit me every fall, and earlier and earlier each time. I only mustered the motivation to get 7 instead of 10 credits in grade 11, but in grade 12 I dropped out entirely in the fall and didn’t go back that year.

But — I always wanted to go to university, even at my lowest points when I hated school with a burning passion, and if I was going to go on schedule, I would have to work extra hard to make up for all the credits I missed. In my grade 13 year (Ontario had grade 13) I took independent study courses during the summer, then course overload when I went back for my final year of high school. Not only did I finish all the courses I needed to finish, but I did exceedingly well in them — so well, that at the graduation ceremony I didn’t attend, I won three subject awards (Geography, History and Drama) as well as a “top student” cash prize and a bursary from the Sisters of St. Joseph.

I aced my first year of university, too, getting straight A’s (and an A+ in Roman history) while everyone else on my floor was having trouble adjusting to higher expectations and barely managing C’s.

The next year the depression hit again. I dropped out almost completely. I finished only two courses.

I figured the reason I was unhappy was that that particular university wasn’t the place for me so I transfered to the University of Toronto, but the depression appeared again…and again the next year…and again the next…forcing me to drop out of a number of courses, and then, in my “third” year, I quit altogether and went to Europe where I experienced a huge bounce in mood.

I came back exhilarated, and with a new purpose: I told myself that I absolutely had to finish my degree because otherwise I wouldn’t be able to go traveling again. Just like my last year of high school, I studied over the summer and took course overload so I could finish. And again I completed my courses with extremely high grades and won an award for top philosophy student at my college.

It’s too tedious to recount the ups and downs of the post-BA years — suffice it to say that I lived the same pattern of debilitating depression at some times and extremely high achievement at others. More recently, highly stressful academic programs in Vermont and Cairo created a situation in which I was doing well academically but couldn’t handle the pressure psychologically, so I started breaking down all the time. I almost had to leave both programs, but in both cases, supportive teachers urged me to tough it out. I’m glad I didn’t quit, even though the psychic damage was horrible and the loss of face humiliating.

And then, this past year, I had to cope again with the debilitating depression. I should have finished my degree last year, but I didn’t. I should have made a decision about where I was going to live…but instead I kept deferring the decision by a month here, two months there, until I find myself now, a year later, with very little to show for it. Another lost year.

All told, I estimate that I’ve lost about eight or nine productive years. Eight or nine years down a sewer. Eight or nine years of my youth — the time in a person’s life where they’re supposed to be laying the foundation for their future career as well as forging relationships and developing various skills and interests. The infuriating stop-start character of my academic life meant that I wasted a lot of precious time that I’ll never get back.

And where other, normal, people were finishing their degrees in four years like they were supposed to, it took me 7 years to do my BA; almost 3 to do a 2-year Master’s program in Philosophy; and several years to finish the current Master’s…if it ever does get finished, that is.

I survey all the wreckage in my life, and it makes me angry. It took 22 years for a psychiatrist to figure out that I didn’t have ordinary depression and in the meantime I was made so much worse by the antidepressants and the fruitless talk therapy. Any one of the psychiatrists I saw during the last 15 years or so should have clued in when the SSRIs plunged me into a living hell of near-constant agitation and suicidal thoughts — in my reading I’ve discovered that it is well known that bad reaction to SSRIs can often indicate bipolar disorder. This is not obscure information.

I often wonder what my life would have been like if I had been properly diagnosed much earlier. What could I have accomplished if every year was like those good, productive years? Where would I be now? What kind of life would I have? It should be too depressing even to contemplate, but I still wonder about it every day.

Pass the shrimp

According to a blood test, I don’t lack intrinsic factor after all; my doctor said that the B12 deficiency is probably due to my diet. Now, it doesn’t really matter what caused it because the treatment is the same regardless, and the supplements seem to be working. But I am mystified by this. I guess all those times I ate chicken, fish, and dairy, I dreamed it.

In other news, I am reconciling myself to suffering with debilitating depression for the rest of my life. It never fails — a few good days where I feel like a normal person (or what I imagine a normal person to feel like, since I am not normal and can only guess) are followed by a horrible crash, where it feels like the pavement has come up to meet my face. And then for days and days or weeks and weeks or months and months I feel like I’m standing out in the cold, looking in through a window at a party to which I haven’t been invited.

Pass the shrimp

I saw the doctor yesterday, and it turns out that my B12 deficiency was not due to a lack of intrinsic factor in my stomach. He suggested that the most likely explanation was that my diet was poor in B12.

I’m not a vegetarian. I guess all those times I had chicken or fish, and all those times I ate cheese…I must have dreamed it.

Unsolicited advice

From a post at Unfogged:

Last night I watched The Bridge, which consists of footage of people jumping off the Golden Gate bridge, captured by cameras that recorded year-round, and interviews with the suicides’ friends and family. The sense of helplessness from those left behind is overpowering. In most cases, there were plenty of warning signs, and attempts, however ineffectual, to help. But short of having people committed, which some people regretted not doing, there didn’t seem to have been much to be done.

I haven’t seen The Bridge, myself, so I don’t know anything about the cases featured. Perhaps those people were batshit crazy, and truly nothing their loved ones could have done would have prevented their suicides. But the post made me think about my own long history of depression and furthermore made me think that it might be useful for people to read a detailed account of the things that I think are helpful and not helpful when my mood is low. I’m not batshit crazy, but I am quite seriously depressed, and the way people relate to me and react to my depressed moods actually does make a difference, however small. I want to address these “ineffectual attempts to help” because I’ve seen these ineffectual attempts up close and have some insight (admittedly limited and and borne of my own personal, idiosyncratic circumstances, and as always, YMMV) into what people can do to help a depressed person feel better rather than worse.

If you google “depression advice family friends” up come a plethora of sites with lists of things to do and things not to do when someone you care about is depressed. The advice ranges from bad, to vague / neutral, to pretty good.

On what I consider the “bad” end, we have this list of things family / friends should keep in mind, which appears on a number of different sites.

Depression is an illness that has many facets. It helps to understand depression symptoms and specifically how they affect people’s relationships with others. It is important to keep in mind that people suffering from depression:

…have low self-esteem and lowered self-confidence, and in turn, can devalue or lose confidence in their relationships.
…strain relationships by self-centered behavior, being withdrawn, confused or irritable.
…feel incapable of lightening the burden they are placing on others.
…often don’t realize they need depression treatment, much less the effect their condition has on their loved ones.
…can become non-productive or unable to function in their career, impacting on the lives of others.
…may have lowered libido, which impacts a marriage.
…find it more difficult to think or concentrate, so normal functioning in a relationship is also affected.
…may resist their love one’s attempts to offer depression treatment.

Boy, does this excerpt rub me the wrong way. It’s not that anything on that list is false, exactly; it’s more that it places undue emphasis on how horrible the depressed person is, reassures the family member or friend that they are much put-upon (even though this may not be the case), and says nothing that would encourage sympathy and understanding with the person who is, you know, suffering terribly. Hell, I feel guilty just reading that list.

This in particular pisses me off: “…often don’t realize they need depression treatment, much less the effect their condition has on their loved ones.” Mmmokay. But then there are those depressed people who very keenly feel that their depression is a burden on others; they feel that any attempt to talk about how terrible they feel will be perceived as wallowing in self-pity. Witness the first sentence of the penultimate paragraph of the George Scialabba essay linked to in comments the other day: “Why, you may be wondering, was this long whine ever written down?” He’s written the best thing on depression that I’ve read in a long time, and here he is apologizing, in effect, for “whining”. George, please, do not apologize.

In my experience, depressed people are often acutely aware of how their behavior might seem to others, and is precisely this awareness that leads them to withdraw from social contact and keeps them from bringing up the subject of their suffering. In some horrible cases I know, these stiff-upper-lip types one day wound up in the hospital, or worse, dead, and the people left behind are all, “I had no idea.”

Then we have more bad advice on this website (you have to click on the “how to help” section under “learn…” on the left). I feel a little churlish criticizing it, since the site in general is pretty good and has some valuable stuff on it. Nevertheless:

What you can say that helps:
* You are not alone in this. I’m here for you.
* I understand you have a real illness and that’s what causes these thoughts and feelings.
* You may not believe it now, but the way you’re feeling will change.
* I may not be able to understand exactly how you feel, but I care about you and want to help.
* When you want to give up, tell yourself you will hold on for just one more day, hour, minute – whatever you can manage.
* You are important to me. Your life is important to me.
* Tell me what I can do now to help you.
* I am here for you. We will get through this together.

The second and third suggestions are pretty crap because they’re dismissive and invalidating and I don’t think I’m the only person who’d be hella irritated if someone said that to me. Depression is an overdetermined phenomenon — some of the intensity of the feelings can be explained by its being an “illness”. And I’m sure in some cases things that bother an individual when she’s depressed don’t bother her when she’s not…but not every worry, sadness, or grievance can be waved away as a symptom of illness. No one really argues with the idea that depression often results from a combination of biochemical and environmental factors; those environmental factors should be taken seriously.

The other suggestions are okay, with the exception of “tell me what I can do now to help you.” This is all right as far as it goes, but unfortunately it doesn’t go very far. Perhaps some depressed people are assertive enough to say “hold my hand”, for example, if that’s what they feel they need; and there probably are depressed people who have very close enough relationships with people such that they don’t feel weird about asking others to do their laundry or whatever other tasks seem too overwhelming to perform. But as I said above, many depressed people already feel guilty for spreading their bad vibes around, being a downer, imposing on others, etc.

So when someone asks me, “what can I do to help?”…I have nothing. I don’t want to be a burden. And even if I felt assertive enough to ask for some vague something, I can never be sure how the request will be received. What if I ask for something they’re not prepared to give? What if they feel pressured into doing something they don’t really want to do, because they feel sorry for me? It’s easier — and more protective of my dignity — to say, “nothing, I’m fine”.

Which brings me to another consideration: you want to help the person, not humiliate them. Many people are ashamed of being depressed, because they’re understandably ashamed of seeming weak and needy. A situation in which someone has to come to you to ask for things, which you are in the position of granting (or not), can make someone feel unpleasantly vulnerable. So it’s probably better to make several concrete suggestions of things you would be happy to do and let them tell you what they would appreciate.

Even though I didn’t take much comfort in Kay Redfield Jamison’s memoir, An Unquiet Mind, there were a few valuable things in it. For instance, in describing one of her blackest depressions, Jamison mentions a friend who was aware that she was really depressed. He was worried about her and thought she would benefit from his company, but instead of saying, “I’m worried about you, do you need me to come over?” he told her that he was anxious and had insomnia and that he needed her company; in doing so he made her feel needed and not like an imposition. In her memoir she expresses special gratitude for this deft interpersonal maneuver.

On to the positive. This advice is very good.

First:

Remember that they cannot help being affected by depression.

This might seem like a bland statement, one that’s repeated over and over on websites offering information on depression. But in fact it’s not bland at all. Most advice on depression starts off by emphasizing that it’s an illness that the individual has no control over. Now, I realize that the adoption of a medical vocabulary to talk about depression is motivated in part by a laudable desire to destigmatize the condition and discourage people from blaming the individual for her suffering. Unfortunately, however, I don’t think the “illness” talk does much work here; one can think someone’s ill and have contempt for them anyway, and speaking for myself, I don’t like being viewed as a brain disease on legs, or someone whose very identity is shot through with sickness. And the ugly flipside of seeing depression purely as an illness is that it gives people a handy excuse for dismissing an individual’s grievances or anxieties as chimerical manifestations of sickness that will evaporate once their mood lifts or the right drugs are found.

In my own life, for example, there have been numerous occasions where people have dismissed my fear of future poverty as crazy talk: “Of course that’s not going to happen to you. You’re just depressed and looking at everything through a negative filter.” My fear of poverty, however, is not baseless and should not be dismissed. My severely depressed father lost the ability to work, and there were periods where he lived in his car, or off other people’s generosity, and it’s not outlandish to fear that this could happen to me. Single, female, and mentally ill is a bad, bad, combo, and while I’m not a sociologist, I would guess that these features correlate pretty well with poverty.

So: the depressed person can’t help being affected by depression. That’s the most important thing to know.

Encourage them to talk and listen to what they are saying.

This should be obvious but you’d be surprised at how many people end up talking about themselves under the guise of offering support. Of course, if you’ve experienced depression yourself it can be very helpful to bring it up to underscore the point that the person’s not alone — I, personally, always breathe a sigh of relief when I reveal to someone that I have clinical depression and then they tell me they have it too. But then there are others…like the “friend” of mine who, when I told him that my father had been diagnosed with lung cancer, took the opportunity to go on and on about some great aunt of his who he wasn’t even close to, and how she had cancer, and died, and then the family squabbled over her possessions for months, and when it was settled he got that needlepoint wall-hanging over there by the piano. We never did get back to discussing my situation.

Let them know that you care about them.

Stay in contact with them. Send a card, give them a ring, visit them in their home. Remember that depression can be a very isolating experience.

Both are good advice.

Help them to feel good about themselves by praising daily achievements.

There’s a patronizing way to do this, of course; but when you recognize that your friend or family member is struggling with horrendous depression, achievements that would seem trifling under different circumstances take on more significance. Sometimes just getting out of bed, or paying bills, or eating is an ordeal, and it’s good to let the person know you recognize this. This advice doesn’t need to be limited to small daily achievements, either: for example, so many people get a bachelor’s degree these days that no one is likely to admire a person for getting one, but when that person is living with debilitating depression, that bachelor’s degree might as well be a PhD in terms of time, effort, grief, and anxiety.

There are lots of other good bits of advice I’ve seen here and there: check the (completely understandable) impulse to give unsolicited advice; don’t tell them to “snap out of it”; don’t be flippant, etc. etc. But I want to finish this post with one last piece of advice that I haven’t seen anywhere, and that is: resist the temptation to indulge in overly optimistic talk about what meds can do.

Antidepressants, anxiolytics, anti-psychotics, etc., are a great invention. They allow so many people to lead productive lives and they have prevented a lot of suicides. But notwithstanding the breathless enthusiasm about the newest medications in the media and on Big Pharma websites, drugs are not a quick fix, and in some cases they may not fix you at all. I feel a little angry when I see websites encouraging people to tell their depressed loved ones that “there is treatment” or that “they don’t have to feel this way”; in my case, those sorts of predictions merely raised expectations that weren’t fulfilled.

I started taking antidepressants when I was fourteen. This was in the pre-Prozac Dark Ages, and those drugs did dick for me except saddle me with bad side effects. Then SSRIs came out, and I tried a number of those, but these either did nothing, made me manic, or made me feel so much worse that eventually I refused to try any medications at all. Recently I relented and tried another one; I tried not to allow myself cautious optimism for fear of disappointment. Yeah, sure, this will help, I told myself. You know what they say: twelfth time’s a charm.

Anyway, it turned out that all those doctors I saw during my twenties, instead of battling with me over meds, should have listened to me. If they’d listened to me explain how much I fucking hated those pills, they might have realized that SSRIs were horrible for me because I have bipolar disorder, not unipolar depression — the two disorders are treated with different drugs, and antidepressants on their own can be extremely bad for people with bipolar. So all the happy talk from doctors and others about how antidepressants would help me became extremely frustrating to me. For some of us it’s a long, agonizing trial-and-error; and some people never hit upon something that works for them. And with every drug I try that doesn’t end up working, I feel a little more despair, a little more hopelessness.