Tien Chiu

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You are here: Home / Archives for bipolar disorder

August 15, 2018 by Tien Chiu

Medical crises, mental illness, and patients’ rights

I’ve been pretty quiet for the last two weeks, mostly due to some serious medical drama – side effects of the lithium I was taking for bipolar disorder. It’s mostly resolved now, but I want to explain what happened, why I fired my psychiatrist, and how I’m approaching finding a better doctor. (Bonus: You get my personal “Bill of Rights” as a patient, particularly one with mental illness, who needs medical treatment.)

What happened to me

I wrote my previous blog post on the 29th, and went to bed feeling fine. In the middle of the night, I woke up feeling somewhat thirsty, so I drank a glass of water and went back to bed. This isn’t a huge thing; it happens to me fairly frequently.

But this time was different, because the thirst didn’t go away. In fact, I spent much of the rest of the night feeling horribly thirsty – I drank over half a gallon of water in four hours, and was still awake, tormented by thirst, the following morning.

I wasn’t sure if I had simply gotten dehydrated the night before, so I drank a bunch more water and went to the gym to work out. During a half-hour cardio workout, I drank half a gallon of water (with electrolytes) and still ran out of water before the end. And finished the workout feeling thirsty.

I still wasn’t sure what was going on, so I spent another day drinking water. Daytime wasn’t too bad, but night was excruciating. To make sure I didn’t get dehydrated, I drank 24 ounces of water before going to bed. I slept well for an hour, then woke up feeling thirsty. I drank another 24 ounces of water, and got back in bed. This time I couldn’t even get back to sleep, because my mouth was dry and my tongue felt like a stone in my mouth. I lay in bed for an hour waiting for all the water to rehydrate me, but it didn’t. Finally I got up, drank some more water, worked on the computer for an hour (still feeling thirsty), then abandoned all subtlety, guzzled down a quart of water, and got back into bed. And finally got to sleep, for about four hours. And woke up with a dry mouth, gritty eyes, and a burning thirst that would not go away.

After staggering out of bed and drinking another quart of water (no effect), I started Googling “extreme thirst”. I discovered that extreme thirst generally has two causes: diabetes mellitus and diabetes insipidus.

Diabetes mellitus (what most people mean when they say “diabetes”) causes thirst because your cells stop taking in insulin, your body can’t regulate blood glucose levels appropriately. This typically results in in overly high blood glucose levels. The kidneys then try to protect the body by excreting the excess glucose in urine. This requires a lot of water. So you have to drink like crazy to stay hydrated, because your kidneys are pouring the water out of your body as fast as you can pour it in.

Some more research suggested that this problem doesn’t happen until your blood glucose rises above 200 mg/dl. I had had my blood glucose levels tested six weeks earlier. (Because some of my bipolar medications impact various vital organs, I have a complete blood panel worked up every six months.) Anyway, my blood glucose had soared from prediabetic to diabetic since the previous month – but at the very low end of the diabetic range. Nowhere near 200 mg/dL. If it had soared up further, I was in serious trouble, both because of the immediate problem and because of the implications of swiftly rising glucose levels.

I went on reading.

Diabetes insipidus, the other culprit, is a condition where your kidneys can’t concentrate urine. They stop reabsorbing water as they filter out toxins. So – as in diabetes mellitus, but for different reasons – you generate urine at a frightening rate, and you have to guzzle water almost constantly to stay hydrated. The difference is that in diabetes mellitus, your urine contains lots of glucose, so it tastes sweet, and in diabetes insipidus, it doesn’t – in fact, it has no flavor whatsoever because it’s basically just water. And that’s how these two disorders got their names. “Diabetes mellitus” literally means “sweet urine,” and “diabetes insipidus” means “tasteless urine”. (Let’s skip thinking about how they diagnosed/distinguished these two disorders before modern medicine, OK?)

And what causes diabetes insipidus? Well, for people who are not pregnant, have not had head trauma, brain surgery, or pituitary cancer…the #1 cause is taking lithium carbonate. Which is generally prescribed to treat…surprise! Bipolar disorder.

Guess what medication I had switched to last year?

I kept reading.

It turns out that not only is lithium the most common cause of diabetes insipidus, but diabetes insipidus is one of the most common side effects of lithium. In fact, half of people who take lithium will eventually develop diabetes insipidus.

Further reading didn’t turn up anything new. So I texted my psychiatrist to let him know about my symptoms, asking if it could be lithium-induced diabetes insipidus. A few minutes later (on a Saturday morning!), he called me to say that he was concerned that my blood glucose levels had soared dangerously high, and to get to urgent care as soon as I could.

I asked if it might be lithium-induced diabetes insipidus, and he said it probably wasn’t. He explained that normally diabetes inspidus comes on gradually, and since I hadn’t noticed symptoms earlier, and I was on a very low dose of lithium, it was much more likely to be diabetes mellitus. He suggested getting my blood sugar and kidney function tested, but urged me to go as quickly as possible because high blood sugar can be extremely dangerous.

So I headed straight to urgent care. They whisked me in, ran some tests, and determined that my blood sugar had actually dropped four points since the last time and was now only nine points into the diabetic zone – i.e. nowhere near the level needed for diabetes mellitus to be causing the problem. The labs also showed that my kidney and thyroid function were normal, and that my liver enzymes were unchanged.

I tried to schedule an appointment with my primary care doc, but the front desk wasn’t able to schedule me, and they didn’t know why.

So I texted my psychiatrist to tell him the test results, and that I couldn’t get an appointment with my primary care doc, and asked what to do next. He said, “I’m pretty sure it’s not lithium induced. I don’t know what it is. I think your primary care doc is on vacation, but someone should be covering for her, so call their front desk for an urgent appointment with whoever is covering for her.”

Ill spare you the details of the medical runaround that followed. But when I finally saw the endocrinologist, she snorted and explained that my psychiatrist was wrong. “Exposure to lithium is the driving factor, not the dosage, and since patients taking lithium tend to drink more anyway, it’s easy for it to sneak up on you. Why would you go looking for things like pituitary tumors when the #1 cause of the disorder is a medication you’re taking?”

I finally told my psychiatrist, “I don’t care whether you think the lithium is causing it. I think it’s causing it, and I want off.”

So we agreed to stop the lithium. That night, I was much less thirsty, and the following day the problem had mostly disappeared. Yay!

Which left me with a new problem. I had been taking the lithium to stave off the bipolar disorder. So in another day or two, when the lithium cleared out of my system, the bipolar disorder might start coming back. And some medications, including lithium, have a “rebound effect” – if you stop taking it abruptly, the mental illness comes back worse than when you started taking the medication. Given that my bipolar disorder manifests itself more or less continuously if I’m not taking medication, there was a pretty good chance that serious bipolar depression was barreling down on me and would arrive shortly. I had maybe 3-10 days to find another medication that worked.

I told my psychiatrist that I wanted to try a new med because I was worried about lithium’s rebound effect. He said, “Don’t worry – it doesn’t have a rebound effect. I don’t know why people say that, because it tapers naturally out of the body over about five days. How about we just discontinue the lithium, stay on the lamotrigine, and try something new if the symptoms start coming back?”

I said, “But we experimented last year and found out that the lamotrigine isn’t enough on its own. And I’ve read five research papers on the NIH website [the National Institute of Health funds a lot of U.S. medical research] – and they all say lithium has a rebound effect. So I’d like to go back onto the Abilify, for now.”

So that’s what we did. And, of course, I immediately started looking for a new psychiatrist.

Why mental illness can make it hard for patients to find and address a doctor’s errors

The moral of this story should be pretty clear. Doctors are medical professionals, and in general, they probably know more than you do, but don’t assume they’re right. Especially if you have a life-threatening medical condition. Because in every profession there are some who don’t communicate well, some incompetents, and some who are generally great doctors but just happen to be wrong in your particular case. Even good doctors can be wrong. If your condition is serious enough, their errors can have awful consequences.

This is particularly true for mental illness. Doctors can be arrogant and/or make mistakes in other fields, but for patients with mental illness, these mistakes can be much harder for patients to identify and correct. Because people with mental illness are typically considered to be intrinsically irrational – by their doctors, their family and friends, and themselves. It’s not totally without reason: Mental illness literally means there’s something wrong in your mind, and mental illnesses are notorious for distorting people’s thinking. As a result, if you have a mental illness, both you and the people around you are apt to think that your doctor knows better than you.

It’s also easy to become intimidated by your mental health professionals because, unlike other doctors, your psychiatrist and therapist have the legal power to lock you up against your will, if they feel you’re being both irrational and dangerous. (The legal standard is “if you are a danger to yourself and others”.)

This undermining of your confidence and intimidation by your doctor’s powers can be dangerous. I gained forty pounds over ten years because – despite bugging me for a decade about the need to lose weight – my psychiatrist didn’t tell me that one of my medications had a weight gain side effect. 40 pounds of additional fat on a 140-pound woman is a LOT of fat. That 40 pounds of fat is almost certainly why I now have Type II diabetes and the beginnings of fatty liver disease. And yes, I probably should have investigated earlier, but I trusted my doctor to recognize and inform me if my medications were causing health problems, and he didn’t. I spent over a week suffering from tormenting thirst because he didn’t think it could be caused by lithium, and narrowly sidestepped a rebound effect he didn’t think existed. His errors could have killed me – especially if my mental illness weren’t well-controlled enough for me to be confident of my perceptions and choices.

So if you have a mental illness, please make certain you have the information you need,and don’t trust your doctor unconditionally. Ask your friends or family to support you. If you have a friend or family member who is willing to help, ask them to help research anything you aren’t comfortable with. If you aren’t confident of your own mental judgment and perceptions, ask them for their opinions and observations about your mood. While you should be able to trust your doctor, that trust should not be unconditional – get input and information from others if you can, so you can make an informed decision.

(When I am having mood issues, the first thing I do is tell all my friends, especially the ones who see me regularly, and ask them to look for any mood or behavioral changes. It’s not just a safety net; it’s an opportunity to cross-check my own perceptions and what my doctor is telling me.)

Finding a new doctor

As a result of all the medical drama, I’ve fired the psychiatrist I was seeing, and have signed up with a new one. This psychiatrist is an expert on bipolar disorder. At least, he’d better be, because he heads up the Bipolar Clinic at Stanford, has published 62 peer-reviewed papers about bipolar disorder, and wrote several chapters of the American Psychiatric Association’s Handbook of Diagnosis and Treatment of Bipolar Disorders, which is their manual for doctors.

I trust his expertise. But before starting with him, I’m writing up three documents. The first is a patient history that includes not just medications and bipolar disorder flare-ups, but also my experience with various treatments/doctors, and the overall impact that bipolar disorder has had on my life. I want him to have the most complete information possible before making a diagnosis,and that’s more than symptoms and medications.

The second document explains my goals. There’s the obvious one, getting treatment for my bipolar disorder. But I also want to educate myself about bipolar disorder, at least as it relates to my case and treatment. I could probably see a psychiatrist with far less impressive credentials and find a medication combo that works. But I want someone who knows what’s going on in the research world, and can not only explain things to me at a higher level, but who can point me at research papers that might be useful to me as I educate myself as a patient.

My expectations from a doctor

The third document is a set of working agreements. He gave me a list of his expectations from a patient, which is great. I’m going to give him a list of my expectations of a doctor, and I intend to start our intake appointment next week by discussing those expectations. They’re pretty straightforward.

  1. Explain things to me logically and provide references/other information sources if I ask for them. Don’t talk down to me, and don’t get offended if I sometimes question what you tell me, based on reputable sources from my own research. I don’t think I’m a doctor, but even experts can be ignorant in one particular area, and this is my health and my life we’re talking about. I’d be irresponsible if I didn’t cross-check.
  2. If you aren’t sure about something, tell me you’re not sure. I don’t expect you to be an expert in everything, but I need to know where I can have full confidence and where I might want to verify with other resources. 
  3. Respect my agency in making decisions. Give me your analysis of the situation and let me decide what to do. Don’t withhold information, intentionally or otherwise, because your job is to provide me with the information I need to choose the right course of treatment. I value your opinion, but the choice is mine, not yours, and I need full information to make that informed choice.
  4. Work and communicate proactively with the rest of my care team.
  5. Don’t drop me just because you think I’m going to kill myself.

I consider this a basic patient bill of rights. You would think this list would be obvious, but so many doctors and medical professionals don’t follow these practices. (#5 actually happened to me once, believe it or not, and it almost killed me.) With the exception of the last one, the psychiatrists who have treated me have all (eventually) failed this very basic test.

I don’t want it to happen again, and I figure that I am much more likely to be treated the way I want if I make my expectations clear upfront. If a doctor has problems with this, that’s great, because I learned it upfront without wasting my money and risking my health and my life. If it isn’t an emergency, I’d rather have a bunch of doctors decline to treat me than wind up with someone I don’t want to see.

I’m pretty sure my new psychiatrist will be fine with this, but I’m writing my goals and expectations documents up and sending them to him a week in advance. I’m going to ask him to read both documents well before our first meeting, so we can cancel our appointment if this isn’t okay with him. I don’t want to waste my money on an expensive expert that I can’t work with.

Fundamentally, this is all about one basic principle: Your doctor works for you. A lot of people find medical professionals to be intimidating and feel that they have to do what their doctor tells them to, because the doctor is an expert and you’re not. But the doctor is your employee. You’re the one calling the shots, even if someone else is paying their salary. So if you are able to change doctors, and if you are not satisfied with your doctor – fire him or her, and find a better one. (Though if you want to be tactful, say “I’d like to switch providers” rather than “You’re fired!”)

Your doctor is an expert you’re paying to make recommendations, but you’re the one making the decisions, and you’re the one in charge of your treatment program. If your doctor doesn’t recognize this…find another doctor.

Filed Under: All blog posts, mental illness, musings Tagged With: bipolar disorder

October 20, 2017 by Tien Chiu

Your normal is not my normal: Why people misunderstand mental illness

I’ve had a number of interesting conversations since my last blog post, which has given me more insight into why mental illness is so misunderstood, both by people who have it and people who don’t. Here’s why:

Your normal isn’t my normal. In fact, it’s probably very different.

This is actually true for everyone, because everyone’s life experiences vary. People who live in different communities and cultures, or under different circumstances, will have very different ideas of what constitutes “normal” life.

People tend to assume that what is normal for them is normal for everyone else. This works pretty well when you are surrounded with people with similar life experiences, i.e. most of the time for most people. But it’s literally a killer for people with mental illness.

Here’s why.

I grew up with bipolar disorder. I was probably asymptomatic as a little kid, but like other people, I don’t remember much from my childhood. It was definitely present from the time I was twelve or thirteen, so I have had bipolar mood cycles as far back as I can remember. Aside from the decade or so that I’ve been on medication, I’ve spent my entire life cycling up and down. Those mood cycles are “normal” for me. It’s what my body and brain do if allowed to interact naturally with the world.

It took me thirty-four years to realize that other people experience the world differently. Very differently. Everyone assumes that their reality is normal. And since you can’t see inside other people’s heads, there’s no way to know what their reality is like. You have to go on behavior. What do they say? What do they do? Are there any differences between what they do and what I do?

And because mental illness is invisible, I simply didn’t realize that there were differences between me and other people. Yes, I got anxious and depressed frequently. But so did my friends. Teenage angst and depression are nothing new; my parents either didn’t notice, or figured it was a phase everyone went through. (They had other problems to deal with at the time, so it would have been fairly easy for it to go unnoticed.) I figured I was basically like everyone else – especially since I managed a straight A average and was the captain of a state champion math team. So clearly, whatever it was, it wasn’t serious, nor was it atypical.

In college, I didn’t notice it either. I went to a pressure-cooker college. We were all stressed. Feeling depressed and anxious wasn’t anything abnormal among my friends – half of whom were on medication for mental illness – so again, I assumed that was just a normal part of college life. And I was doing fine in my classes. I had no reason to think that other people experienced the world differently.

Even when I was hospitalized at the end of my first year of graduate school, I didn’t realize that other people’s thought processes were different than mine. Everyone thought I had depression – well, normal people get depressed when they’re in a stressful environment. You go to therapy, you get over your childhood traumas, you get better. I went to therapy, things got better, and I figured I was cured.

The thing was, my experience was never normal. But I had no way of knowing that, because it didn’t even occur to me to question it. I had “up” periods, where I would have a lot of energy, get lots done, and be really happy. Awesome! People thought I was super-productive! I was an amazing person! But I also had “down” periods, where I got really stressed out and had trouble functioning. I thought that was because of my environment, because people get anxious when they’re in a stressful environment. I did my best to fix that. And I learned ways to manage my mood swings.

What I didn’t understand is that normal people don’t have those mood swings. I always assumed that other people reacted to the world the same way I did: some periods of high productivity followed by some periods of low productivity. To all appearances, I looked normal, except for being freakishly productive sometimes and less productive other times. That’s not unusual. And I was really good at dragging myself out of bed on days when I was freaking out, because everyone else shows up to work on time, and if they can drag themselves into work on their “down” days, you should too. Or you’re being lazy.

And that’s the root of society’s problem with mental illness. I assumed that other people were undergoing the same mood swings that I was. I had no conception that this might be abnormal, because it was normal. For me. Why would you question something that’s completely normal? Do you notice that you breathe? I didn’t. What I did notice was that other people were coping with their mood swings a lot better than I was. I wondered, more than once, why I just couldn’t seem to get my act together.

The problem cuts both ways. Someone who has never had depression doesn’t have any concept of what it’s like living with depression. To them, “feeling depressed” is what happens when they aren’t quite feeling up to snuff themselves. Well, everyone has their down days, but you can’t just let that stop you. You get out of bed anyway, you take a shower and eat breakfast, and a few hours later you’re no longer feeling depressed. If you stayed in bed, you’d have wasted an entire day! The solution to depression isn’t to give in to it, but to get yourself going.

That works for normal people, because their depressions are temporary – a couple hours or days – and generally not as severe as the person who can’t get out of bed. Let me give you an idea of what the depressed person may be going through.

I’ve been tweaking my medications for the last few months, because one of the meds I was on for over a decade has a weight gain side effect that has resulted in my putting on 40 pounds in the last ten years. Long-term, that becomes a serious health issue, so my psychiatrist and I decided to see if we could find one that controlled the bipolar disorder without predisposing me to gain weight. So we’ve been experimenting with different medications. It turned out that the last one didn’t control the bipolar disorder, so a few days ago I actually had a day of relatively mild bipolar depression, the first one in over a decade. This is what it was like.

I woke up in the morning feeling both emotionally and physically exhausted. That’s how I feel when I’m coming down with a cold, so I went back to sleep. When I woke up again, I was feeling a bit better physically, but still feeling emotionally drained, and a bit anxious. Low blood sugar and/or dehydration can do that to me, so I drank a quart of water, and ate a piece of fruit. No change. I thought about calling my psychiatrist, but figured I’d try a workout first. So I did about half an hour of intense exercise, which helped, but an hour later the anxious, depressed feeling came back. I still wasn’t sure if it was something physically wrong or a bipolar episode, so I figured I’d wait an hour and see how it went.

I sat down at the loom and started threading my next warp. Here’s what was going through my head. The flow of my usual thoughts is in normal text; the thoughts of my “watcher” (the part of me that constantly monitors my mood and interrupts if it sees something abnormal) are in italics.


Wow, I hope this isn’t a bipolar episode. I’ve been through four new meds in the last three months, but they’ve all had bad side effects, and this latest combination may not even be working. I’m starting to run out of new medications to try.

Well, I can always go back on the Abilify, I guess. But if I do that, I’ll keep gaining weight, and then I’ll have all the physical problems associated with weight gain. I might wind up with Type II diabetes, and that might kill me too.

On the other hand, Type II diabetes isn’t nearly as bad as bipolar disorder, and if it kills me, that’s how it goes. I’ve already had twenty-six years longer than I would have had without medication. I’ve had a good run, I’ve had a lot of bonus time. It’s not so bad.

Wait. Why are you suddenly being so morbid?

Well, because I’m in a bad spot. If these meds aren’t working, then I’m doomed.

Stop. This isn’t normal. This is bipolar depression, and you need to call your psychiatrist..

(Gets up, calls psychiatrist, leaves a message.)

Okay, now where were we?

You were obsessing over morbid stuff and getting yourself more depressed. Stop doing that. Think about something positive.

OK, fine. I’m working on this scarf, let’s focus on that for awhile.

(A few minutes go by.)

Gee, I hope I can finish these scarves in time. It was really stupid of me to have lost the ones I wove earlier. Now I have to spend this week re-weaving the scarves so I can get them to Handwoven before the article deadline. That’s an entire week lost that I could have been working on the business! Now I won’t be able to get the class out in January, as I had planned. In fact, if this bipolar medication adjustment thing keeps going, I’ll never be able to get anywhere on the business. Then I’ll run out of money and have to depend on Mike, and that will totally ruin our relationship.

Stop. You’re obsessing about negative stuff again. This is depression, not reality. I’m certain of that, because you weren’t thinking like this all day yesterday – you were being much more positive and feeling much less bleak about the future. This is not reality. Let go of those thoughts, and realize that this is going to pass. You just need to get through today, and tomorrow you’ll try something else and it will probably work. If it doesn’t, you can always go back on the Abilify; you know that works. It’ll be okay.

Okay, whatever you say. But I’m still worried about this whole bipolar thing. I mean, I know Mike gets stressed when I’m not feeling well. I worry that all this experimenting with medications is going to cause him a lot of stress and make him get anxious himself. I don’t want to cause him any problems, especially if things get worse and I start getting suicidal, like last time. I don’t know how he’s going to handle it.

WILL YOU FUCKING STOP?!?!?


Of course, I didn’t stop. That’s one of the problems with depression: it doesn’t stop just because you tell it to, or because you know it isn’t “real”. In fact, this went on all day. I would start thinking negative thoughts and spiral down into obsessively morbid thinking; I’d catch myself a few seconds or minutes later, and stop that train of thought. Two or three minutes later, it would happen again. All. Day. Long.

Fortunately, I know various ways to cope with this, since I lived with it for most of my life. Exercise helps, if only temporarily. Talking to other people can reset my mood briefly. Doing something that occupies my brain will help keep it from happening – I can’t have negative mental dialogue if I’m so absorbed in what I’m doing that I don’t have mental dialogue at all. I also knew this was temporary, because I knew I had an effective medication combination to fall back on. If I hadn’t known that, I would have been terrified. One day isn’t bad, it’s like having a serious headache all day – painful, but livable. But when it goes on for months, that’s incredibly painful. It can drive you to suicide. (Trust me.)

My basic problem with bipolar depression is that it is constantly trying to change my concept of “normal” to something negative, painful, and hopeless. I’ve had enough cognitive behavioral therapy that I can identify that the shift is happening, and get myself out of the downward spiral of thoughts, but it’s like chasing a hyperactive, obsessive two year old, because twenty seconds later, it starts happening again. It’s like living with an abuser who is trying to gaslight you into thinking that your previous perception of reality was totally wrong. But you can’t walk away from this abuser, because it’s your own brain. You live together; you’re always going to live together. So there’s no way you can stop this from happening; the best you can do is grit your teeth, keep reminding yourself that this is not reality – that there is a better and more valid reality out there – and just keep hanging on.

This particular day was actually pretty mild. I didn’t get a lot done, but I was more or less OK. There are other things that happen when I’m having a more serious episode. For example, I start having random moments when I think of something I did wrong. Not so bad in itself, but these flashes of memory are invariably accompanied by a vision of being tortured – my arm with its skin flayed off, a knife stuck into my back, and so on. I’m not stupid, and I’m not psychotic: I know perfectly well that those visions aren’t real. But they’re also unpleasant to deal with, for obvious reasons, and they happen more and more frequently as the episodes get more serious. When they’re really bad, they happen several times an hour, sometimes even more often. Knowing that it isn’t real, that it’s just your brain biochemistry trying to kill you, isn’t that helpful when it’s happening a hundred times a day.

My point in all this isn’t that my life is woeful and you should feel sorry for me. My point is that the mentally ill person who is lying in bed, unable to get up that day, is probably having a very different experience than the “normal” person who had a bad day yesterday and is feeling kinda down, and wouldn’t it be nice of they didn’t have to get out of bed? But the difference isn’t visible, either to the mentally ill person or the normal person. So the mentally ill person thinks that there’s something wrong with them because they somehow aren’t coping with the insanity as well as other people do. And the normal person thinks that the mentally ill person just doesn’t have the willpower to get up and deal with it, and if they did, everything would be fine.

I am fortunate enough to be able to see both sides. Having lived with mental illness for a long, long time, I have an intimate understanding of what it’s like to live in a brain that is trying to kill you. But I’ve also been living a pretty bipolar-free life, on medication, for the last ten years. After a decade, I’m finding that my experience is pretty “normal” – or at least fairly pain-free. (I actually have no more idea of what is actually “normal” than you or anyone else does, since I can’t see into anyone’s head but mine, but at least I’m no longer having mood swings.) If I had lived my whole life in “normal” mode, I’d have absolutely no clue what living with mental illness is like. And for the thirty-four years I was living in “mental illness” mode, I really didn’t understand that “normal” people experience the world totally differently.

So that’s why I think people misunderstand mental illness. Everyone thinks that their perspective is normal. But your “normal” isn’t my normal, and if you don’t recognize that, your assumptions about mental illness can lead to terrible things.


P.S. The latest medication works just fine, so it was just that one day. What a relief!

Filed Under: All blog posts, musings Tagged With: bipolar disorder

October 14, 2017 by Tien Chiu

Some thoughts about mental illness

Tuesday was World Mental Health Day. I was traveling at the time, so I didn’t have enough time to do more than a quick Facebook post, but I’d like to say a little more today.

I have bipolar disorder. I’m lucky enough to live in a context that allows me to be “out” about having a mental illness. I also believe that the only way to eliminate prejudice against people with mental illness is for those of us who can afford to be “out” to speak up, to make ourselves visible. Only by stepping forward and sharing our experience can we put a human face on mental illness and end the stigma. We need to convince people that we’re not violent crazies or lazy bums – we’re your next door neighbor, your friend who hasn’t felt safe enough to tell anyone, your coworker, your cousin, child, spouse.

So in that spirit, I’d like to talk a little bit about my own experience, and why I feel lucky (in some ways) to have bipolar disorder rather than another mental illness

A little medical background:

Some mental illnesses are caused by psychological trauma, and some are biologically driven. Both are serious, and both can be lethal. But you treat them in different ways. Illnesses caused by psychological trauma can frequently (not always) be cured by talking with a therapist over a period of time. Psychiatric medications can stabilize your mood in the interim.

Biologically driven mental illnesses are the result of a fundamental imbalance in brain chemistry. Therapy can (to some degree) help you manage the symptoms, but won’t cure the underlying disorder. To manage a biologically driven mental illness, you need to take medications to get your brain chemistry back in whack, and keep it that way.

Bipolar disorder is one of the biologically driven mental illnesses, and it is incurable, though it can (sometimes) be managed through psychiatric drugs. Because I have bipolar disorder, I’ll always be at risk for mania and depression unless I take medication for the rest of my life. I’m lucky in having found a set of medications that works, with relatively few side effects. Many people aren’t so lucky.

Some of the biologically driven mental illnesses are genetic. Bipolar disorder is one of them. In fact, a recent NIH study reported that “the [three largest recent twin studies] estimate the heritability (proportion of disorder risk in the population attributable to genetic variation) of BPD to be 79 ““ 93%, substantially higher than even medical disorders such as breast cancer for which specific susceptibility genes have been identified.”

In fact, bipolar disorder is one of the most heritable of all medical disorders – which means that it is indisputably genetically driven. It also means that if you have bipolar disorder, your children are much more likely to have it, too. (One of the reasons I chose not to have children is that there’s a 15-25% chance that any child I bear would have bipolar disorder. I wouldn’t inflict that on my worst enemy, let alone a beloved child.)

Now, some people with bipolar disorder have relatively stable moods most of the time. When their moods shift, they’ll be “up” or “down” for weeks or months at a time, and they can go for years without any episodes at all. I, however, have Type II ultra-rapid-cycling bipolar disorder, and mine manifests more or less continuously if I’m not on medication. I’ll swing from hypomanic (lots of energy, act impulsively, start lots of projects, etc.) to anxious/depressed on a cycle of a few days or weeks – sometimes even within the same day. Sometimes the mood swings are relatively mild, and I can manage them easily; under stress, they become worse. If I don’t manage them carefully, they can spiral out of control, become incredibly painful, and potentially kill me. This has happened on at least three separate occasions, and is terrifying. After the last severe bout, which lasted for six months (it’s frankly miraculous that I survived), I decided that I would rather die than go through that again. It was at least a decade before I felt I might change my mind about that, and I suspect that’s mostly because I’ve forgotten how painful it was.

Managing mood swings without medication means being constantly alert to my moods, and constantly checking whether my perceptions are “normal” or not. The insidious thing about mood swings – well, mine anyway – is that manic or depressive thoughts always seem perfectly reasonable at the time. So – without meds – every time I feel good or bad I have to stop and say, “Wait, am I feeling better or worse than a normal person would in this situation?” My mood can shift from perfectly fine in the morning to feeling completely depressed, stressed, and overwhelmed in the evening. The mood shift can last hours, days, or months.

I can control the mood shifts to some degree. That is, if I’m thinking, “I’m such a loser, there’s no way I can do this, life is terrible,” I can catch myself and say, “Stop, you’re depressed. Your thinking is out of whack. Let go of the stressful emotions. Go meditate or exercise and you will feel better.” And then I go off and do that, and my mood generally improves (or at least doesn’t get worse). I have an entire checklist I run through whenever I’m feeling particularly good or bad – a set of symptoms/thoughts/behaviors that indicate I’m in the grip of a mood swing. I also have another checklist of things I can do to alleviate a mood swing. This works most of the time, but it takes a lot of time and attention, so it’s a constant drain on my time and energy. Unfortunately, the mood swings get a lot worse when I’m stressed out – which is generally also when I have the fewest resources to deal with them. The net result is that stress can easily kill me. (I put a LOT of work into controlling my stress level.)

The good news is that I’ve found medications that work very effectively. Lots of people with bipolar disorder aren’t so lucky, and some choose to stop taking their meds because they miss the glorious highs of manic episodes or feel emotionally “flattened” by the medications. Because I have Type II bipolar disorder, which manifests as cycles of depression and hypomania (mildly manic but not dysfunctional), I’ve never had a full-blown manic episode – for which I am truly grateful, because it means I don’t have any highs to miss. And my medications stabilize me on the functional side of hypomanic, so I have a lot more energy than most people, but not to the point of being dysfunctional. It’s a good place to be, and I’m very fortunate.

So I have a biologically driven, genetic, incurable mental illness that is (thankfully) well-managed with medication. I think this makes me pretty lucky for someone who has a mental illness. (And even more so since I have insurance that pays for my meds.)

Here are four reasons that I feel I’m lucky.

My medications work. Because every person’s body and brain chemistry is different, there’s no guarantee that a particular medication (or combination of medications) will work. Many of the people I know with mental illness have medications that help, but which don’t control the problems completely, or have debilitating side effects. Mine work, with relatively few side effects, which makes me very lucky. (And very grateful.)

I am confident that my mental illness is a serious issue. Because mental illness is invisible, and is stigmatized/poorly understood by our society, many people with mental illnesses regard their problems (subconsciously or consciously) as “not serious,” even if the illness is debilitating. This is especially true for people with lifelong mental illness, or who have lived with a mental illness for a long time, because they have no yardstick for “normal”. They tend to think of their illness as “not that serious” because the symptoms – even if severe – are just part of normal life for them, and they’re getting by, if poorly. (I was in my early thirties before it occurred to me to ask a friend whether she also had visions of being tortured or killed every few hours. Her shocked response startled me. I had never realized that this was abnormal, because I’d had them all my life.)

So, up to the point of hospitalization, I regarded my problems with depression as “not that bad” and wondered why I somehow wasn’t coping with life as well as everyone else. As I’ve said many times since then, one of the “advantages” of almost getting killed by a mental illness is that the locked ward of a mental hospital, on 72-hour hold because your psychiatrist and therapist both think you’re about to commit suicide, is a great place from which to survey your life and think, “Hmm, maybe I actually do have a problem.”

At that time I thought I had depression, and that it could be cured. After I got out of the hospital and rebuilt my life, I was still living with mood swings, but again, I thought they were normal and it was just a matter of managing them – which other people were apparently doing a lot better than I was. It wasn’t until bipolar depression almost killed me a second time that I got clear that my mental illness was real, and that it was something to be taken very, very seriously. This makes me lucky among people living with mental illness, because it’s very hard to believe that your illness is serious when it’s (a) invisible to everyone except you, (b) feels normal, and (c) uninformed or uncaring people are happy to tell you that your problems are imaginary.

I know that my mental illness is a medical and not a moral issue. Most people with mental illness have been told at one point or another that they should stop being lazy, stop being oversensitive, or that the trauma is over and they should get over it. (Etc.) And because they’ve been told that so often by others, it’s very likely they’re telling that to themselves. When I thought I ‘just” had depression and that therapy would cure it, I wondered if I was weak or lazy because my childhood experiences were causing me so many problems. Having an illness that is unmistakably biologically driven makes it very clear that it has nothing to do with my morals, work ethic, or strength of character. It’s something I was born with, and is the result of a chemical imbalance in my brain. For those with more ambiguous mental illnesses, it’s much harder to recognize that it is an illness, not some form of moral problem or weakness of character. (Especially when there are so many people who will tell you that it is a problem with your character.)

I don’t feel that I have an obligation to cure myself. This is really difficult, especially for people with a lifelong illness. Many people (both “normal” and people with mental disorders) feel that mental illness is something temporary, that you can “tough it out” or “get over it.” If you’re a normal person going through an unhappy situation, this may work (though I think it’s a pretty inhumane way to treat yourself). But if you have a mental illness, it can be devastating or even fatal. Telling someone with severe depression to “tough it out” makes exactly as much medical sense as telling someone with a broken leg to cure it by running a couple miles on it. Unfortunately, people with mental illnesses get told that all the time, and the results can be fatal. And because people think of mental illness as temporary, people who have recurrent mental disorders are frequently labeled as “lazy” or “making excuses”.

So the “nice” thing about having a disorder that is scientifically demonstrated to be genetic, incurable, and biologically driven is that I don’t feel the need to “cure myself” or “get over it”. I’ll be living with this for the rest of my life, and if you think it’s my obligation to get better, I’ll deck you without hesitation or apology. Many people with mental illnesses, particularly incurable ones, have a really hard time believing this, even though it’s true, because they’ve gotten so many messages to the contrary.

Living with mental illness can be excruciatingly difficult – both because it is intrinsically challenging, but also because it is physically invisible, and thus easy to deny or minimize. This means that if you have a mental illness, you don’t just have to grapple with your medical problems. You also have to fight to get other people (and yourself) to understand that the problem is medical, that it’s something that needs to be taken seriously and treated, and that you may never be “cured”. This makes the struggle with mental illness ten times harder.

Because my mental illness – bipolar disorder – is both life-threatening and incurable, it is easier for me to recognize and articulate some of these issues. That, I think, makes me lucky, among people who have mental illness.

Filed Under: All blog posts, musings Tagged With: bipolar disorder

February 25, 2016 by Tien Chiu

New warp

I’ve been waffling for the last few weeks over the next warp. My designs are still evolving, which means rapid changes to the required setup. But once your warp is on, you’re committed – for the next few months, until it’s done, that part of the design is fixed. So I have been going around in circles trying to choose my warp.

But at some point, you have to quit waffling and commit. So here are two of my three warps:

blue warp
blue warp
red warp
red warp

The third warp is white, a wool/alpaca mix, but it’s less interesting, so not shown here. (The piece is triple weave – three layers of cloth at once – so I’m using all three warps at once.)

I’m sure you’re shocked, absolutely shocked, by my choice of colors. At some point I will have to move beyond fiery oranges and reds contrasted against deep blues and purples. However, that day is not today, and I’m still enjoying exploring my two favorite color families.

The triple weave warp is 20 yards long, and the two dyed warps are composed of silk, mercerized cotton, and unmercerized cotton. These all take dye slightly differently, so would add subtle color variation in the warp. This almost led to disaster, though. I did an initial sample using red dyes, and liked the results, so I launched into dyeing the full warp. To my horror, one of the yarns did not absorb much dye, and came out as a pale pastel – not so bad in the red warp, but highly visible in the blue warp:

blue warp, after first dye round
blue warp, after first round of dyeing

I couldn’t figure it out. Unmercerized cotton sometimes contains waxes that result in poor dye absorption; maybe that was it? I simmered the yarn in hot water, a bit of alkali, and detergent to remove the last of the waxes, soaked it in soda ash again, and dumped a bunch of blue/purple dyes on top. This gave me deep, dark colors – but the pastel shades remained stubbornly pale:

blue warp after round 2
blue warp after round 2

I was ready to throw up my hands in despair. The unmercerized cotton still wasn’t taking dye, even after heavy scouring. I’d have to wind and dye a new warp, substituting a different yarn.

Then I took a closer look and realized that I’d fingered the wrong suspect. Both cotton yarns had dyed beautifully. It was the silk that hadn’t absorbed the color. That was a shock, since I’ve dyed silk quite successfully with fiber-reactive dyes before. However, that suggested a new line of attack, so I said a few Hail Marys and then dumped the entire warp into a blue/purple dyebath – this time using acid dyes, which are designed for protein fibers such as silk and wool.

And it worked! Here is a closer look at the blue warp:

blue warp closeup
blue warp closeup

The silk threads look much more harmonious now.

Of course, after three dyebaths and a second scouring, the warp may turn out too tangled to use. But I think there’s hope. We’ll find out once the warp is dry and I can start beaming.

At 20 yards, this warp should be sufficient for the three pieces I’m envisioning, all about bipolar disorder.

Speaking of which, some people have asked if my current artistic focus means that my own bipolar disorder is resurfacing. No fear, it’s completely under control. (Modern medications are wonderful!) My work is born of the conviction that we (as a society) need to talk more about mental illness, so people understand it better. One of my goals, since I have chosen to be “out” about my own experience, is to open up that conversation, both to educate people and to eliminate the stigma associated with mental illness.

Filed Under: All blog posts, textiles, weaving Tagged With: bipolar disorder, bipolar prison

February 6, 2016 by Tien Chiu

More ideas for new work

I’ve been frantically prepping show entries for the last week or so, but yesterday I got back to my sketchbook and began sketching up ideas for another piece about bipolar disorder. I’ve arrived at an image that I like, and I thought I’d share it with you. The tentative title for this piece is “Bipolar Prison,” for obvious reasons:

Sketch for "Bipolar prison" piece
Sketch for “Bipolar prison” piece

The piece is a mashup of several ideas, but the basic concept is a face dissolving into a chaotic mishmash of colors corresponding to mania and depression. Two stripes in the fabric, one blue and one red, represent the prison bars. (The background colors are drawn from/inspired by Inge Dam’s stunning work – if you haven’t seen it already, check out her website. Her weaving is phenomenal.)

This design still needs considerable refinement, but I really like the concept, and will try to do both this and the bipolar brain project on the next warp. Not sure if that’s feasible, though, as both require complicated fabric engineering. The bipolar brain requires weaving two layers of cloth (stitched together in strategic spots and then partially felted). The bipolar prison piece requires three layers, which will mix throughout much of the piece. Figuring out how to make these pieces will be both interesting and challenging! But I am really enjoying the mental gymnastics so far.

In other projects, I spent four or five days banging my head against the cat placemat design, sampling and tweaking and sampling and tweaking. But I think I finally have the design right, and am 1/4 of the way through the first placemat. If I finish it tomorrow I will take a quick photo and add it to my show entries for the Complex Weavers’ Complexity and the Convergence Mixed Bag exhibits. I don’t seriously expect they would be accepted in either show, but it’s worth a try. I’m not going to kill myself getting it done, though – Mike is sick right now, so I’m staying well-rested to (hopefully) avoid catching his cold.

I am now clearly on the tail end of the current warp, so I may only be able to weave one set of cat placemats. That’s fine with me – they’re amusing, but take a long time to weave. And I’m eager to get on to the next two projects, which have really fired up my imagination.

Filed Under: All blog posts, textiles, weaving Tagged With: bipolar disorder, bipolar prison

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