5 tips to living your best life with bipolar disorder

I’m medication resistant, meaning that meds don’t fully stabilize my cycling. I’ll never be the person who can say “nobody even knows I am bipolar”. In fact, I have to disclose my bipolar disorder to most of the people I work with, due to how it impacts my working hours.

I’ve tried every atypical antipsychotic approved for use in psychiatric patients in the United States except for clozapine (although that has been on the table) plus two typical antipsychotics, three anticonvulsant mood stabilizers, and many other drugs including benzodiazepines, antidepressants, hypnotics, lithium, and so on. I’ve taken the tour.

Currently, this is my regimen: olanzapine, risperidone, lithium, diazepam, and amphetamine salts. I continue to experience symptoms, even with all of that on board. So how do I live and continue to work? The answer is not one-size-fits-all, but for me there are a few key components.

1. Consistent sleep times

I try to go to sleep at the same time every night, and wake up at the same time every morning. Of course it doesn’t always work out that way, but I try. I also make sure not to schedule any meetings that are too late at night, and not to stay out too far into the evening, as both of these things will keep me awake. Each person’s natural bedtime is different, so I can’t tell you what time is correct for you, but for me it’s usually between 10 PM and 12 AM (a fairly wide window, I know).

Sleep is super important in managing bipolar disorder.

2. Structure during the day

It helps me if I am able to maintain some regularity and consistency throughout my days. Since I’m an academic and my work schedule is flexible, this is something I largely have to impose on myself. When I’m really struggling I’ll schedule events in my Google Calendar, even for things I don’t “have” to do — recreational activities, like video games or watching anime. The point is to stay busy, but not too busy. Make sure to build in plenty of breaks. This also helps me get the things on my to-do list for work done efficiently.

I use Google Calendar for this.

3. Take meds religiously

This one doesn’t need a whole lot of explanation, but it’s an important point. Don’t stop taking your meds. At least for me, it always ends in hospitalization, and that’s a huge disruption to my life even though I’m quite used to it by now. Don’t get me wrong — sometimes hospitalization is necessary. However, it’s best to avoid it as much as possible, so that I can stay in contact with my friends and family.

Medication is the primary treatment for bipolar disorder, and it must be taken regularly.

4. Light and darkness

Research has shown that light/dark cycles have a dramatic impact on bipolar moods. I use a light box (or “sun lamp”) for a couple hours daily in the winter. You can buy a clinical strength sun lamp on Amazon (I am not affiliated, and do not gain anything from this) but be aware that the market is flooded with lamps that are not full clinical strength. The recommended protocol for bipolar disorder is to start at noon for 10 minutes, then add 10 minutes every day until you reach 1 hour. This is because the sun lamp does run some risk of triggering mania. At the same time, when you go to sleep (or ideally, when it’s naturally dark outside) there is an equivalent if not more important factor: darkness. Total darkness at night has been shown to dramatically stabilize patients who did not respond to conventional treatments.

Sun lamps can help with low mood and low energy.

5. Mindfulness and psychoeducation

The point of mindfulness in this context is to be able to recognize what mood state you’re in. Likewise, it helps me to be as educated as possible. I read tons of papers, but these are not super accessible to everyone; if you trust your psychiatrist, I recommend asking lots and lots of questions so that you can understand as much as possible. I also compiled a list of some of my favorite bipolar books. The insight into what you’re going through can save your life, even if it doesn’t change what you’re going through.

Keeping track of your mood takes time and practice, but it can be a huge advantage in managing bipolar disorder.

Everything Else

by Elliot Gavin Keenan, 11/29/16

Originally published in gravel magazine in 2017; as of 9/24/21, no longer available on their website.

Mozart was crazy. Flat fucking crazy. Batshit, I hear. But his music’s not crazy; it’s balanced, it’s nimble, it’s crystalline clear. There’s harmony, logic. You listen to these, you don’t hear his doubts or his debts or disease. You scan through the score and put fingers on keys and you play. And everything else goes away. Everything else goes away…

— “Everything Else”, Next to Normal

My favorite confessional poet is Anne Sexton, who committed suicide by carbon monoxide poisoning at age 45. A book of her poetry, published posthumously, featured her therapist: 

I have words for you, Dr. Y., / words for sale. / Words that have been hoarded up, / waiting for the pleasure act of coming out, / hugger-mugger, higgiliy-piggily / onto the stage.

When I was in kindergarten, a boy hit me in the forehead with a toy truck during playtime because I asked to play with him. I sat in the corner and cried. Eventually, the teacher called me over. What’s wrong? she asked me. I don’t have any friends, I replied, sniffling. The teacher called all of the kids to the front of the classroom and asked them to raise their hands if they were my friend. Everybody raised their hands. I don’t know why, but this was probably the moment that I became crazy. 

Or maybe I was crazy all along.

She laughed when I told her this story. She said it was incredibly sad and funny. I’m glad she saw how funny it was. Then she asked me, have you ever written about this?

Eunoia is a dated term for mental health. Literally, it means beautiful thinking. However, some of the most beautiful thinking has been done by people with mental illness. Consider the incredible artistic achievements of people like Vincent van Gogh, Virginia Woolf, and Sylvia Plath. And if you look for mental illness in artists, writers, poets, musicians; the list goes on.

We were running about Whole Foods. I say running because she kept forgetting things on her list and going back. We probably circled around the store three or four times, picking up various items along the way. She was in constant motion. Couldn’t stand in one place. Got excited over a jug of coffee. Perhaps she didn’t even notice, but I did: a slight fidget, balancing on one foot at the cash register. We looked at the things she’d ended up buying and laughed. Talking constantly. I am attuned to these kinds of things. She had told me, though, that she felt manic. I wished I felt as manic as she did, but I was not; rather, I was plagued by a familiar moroseness, a heaviness.

Asked about JS, I mused well, I think you’d win a fight with her.

A few months after the breakup with JS, I fucked a fashion designer from the city. He was kind of cute, dyed hair and a stutter. He slept in my bed with his arm around my waist. I slept uneasily. In my dream, I saw JS. It was the first time in a while I’d seen her face in my dreams. I don’t remember what she said, but I woke up all at once warm and shivering, cold sweat dripping down my forehead. I snuck out from the boy’s grasp and went into the bathroom and splashed cold water on my face. Looking into the mirror, I thought how strange it was. I started to cry. He gave me his shirt afterwards.

I don’t usually see people’s faces in my dreams. I rarely ever learn a person’s face. This is a condition known as congenital prosopagnosia. In fact, I only come to individualize the faces of people I’m in love with. When I told her this, she said it was very romantic. I did not tell her that I had come to know her face.

There is a thing known as a flow state: when words come out of your brain like blood seeping from a tapped vein, an insatiable passion for the task at hand. Manics often get into flow states. The world is poetry, you breathe it like air. Maybe this is part of why we are so successful in art. Love is also like a flow state.

She’s a doctoral student in the psychology department. But she told me that she used to write as if seized by a certain fervor for it, for the language, for poetry. I imagined Van Gogh and his passion for painting, his insatiable hunger. I thought I wanted to kiss those lips stained with yellow paint. Yellow, the color of the edges of a street, the boundaries of a self crossed like two neurons, the actualization of a synesthetic dream. To imbibe it is to take all of that in, the passion, life thrust under your tongue. I wanted that. 

When I was a child, I sat by myself at recess. The teachers saw that I was always alone; they gave me chalk to draw on the sidewalk. My hands dusted with pastel yellow, I would watch the other kids play. It’s not easy for me to admit, but I hated them. I truly hated them. My heart was so full of hate that I couldn’t bear to watch them anymore, and I would go to the bathroom and cry. I’ve never been a good person.

Sadness is part of the human condition, said one of my writing professors, a woman who seemed perpetually rather flummoxed by the world. Without it, you’d be a monster. I wanted to ask, with sadness, am I not a monster?

For me it was different. I, too, was seized by passions; but they occurred for me in successions, a pattern sometimes disapprovingly called serial monogamy. I was like that with my writing, too. But when I was engrossed in the page, or lost in her eyes, everything but the space between my canvas and I disappeared. Everything else goes away

I wrote constantly when I was in love with JS. Everything I felt was transferred to the page. She was my muse; she was the gasoline to the fire behind my eyes. 

Kay Redfield Jamison wrote an entire book about the connections between mental illness, particularly bipolar disorder, and artistic talent. It’s called Touched with Fire.

My heart has holes in it. They’ve been there for a long time; before JS, I’m sure. But maybe I could have ignored them before that. Not anymore. I wanted to patch them up, fill them with cement, or gorilla glue the pieces back together and pretend that it was the same as it was before. A clean canvas, a blank page, a fresh start. But it’s never been the same. I’ve always been different from other people. Maybe that is why I write. To escape the sadness of being alone. The desolation, the emptiness, the misery of a life condemned to this certain loneliness.

Sometimes I try to fill the holes with other people’s loneliness. It never works. I knew right away that she wouldn’t be a suitable shape to fit there, like a square peg in the round hole of what I really needed. I was filled with this dread of knowing. But when I looked at her I would forget. 

Everything else goes away.

I was ten years old when I first decided I was going to kill myself. I wanted to slice off my arm with an old circular saw, patched with rust, and die in a pool of blood on the hard cement floor of my garage. I daydreamed about it, wondered endlessly what it would be like to die there, cold and alone and smeared with bright red, a baptism in blood.

It was Anne Sexton’s therapist, Dr. Martin Orne, who encouraged her to write poetry. Perhaps he thought that poetry would be a form of healing, a way to expel her demons through the pen, exorcism in the act of creation. Put your ear down close to your soul and listen hard, she said. I am a collection of dismantled almosts, she said. Suicide is, after all, the opposite of the poem.

But suicides have a special language.
Like carpenters they want to know which tools.
They never ask why build.

Lithium is like an emotional straightjacket, or at least like wearing a shirt that’s too tight. You can’t breathe. You can’t feel the way you felt before, not manic or depressed or happy or sad or anything. You wonder if you can even write. I didn’t write for months after I started taking it.

She told me she feels sadness only fleetingly. We’re opposites, I guess; two sides of the same coin. I live in a state of melancholy permeated briefly by manic interludes. But I wonder if mania is really like happiness. Or is it like a saccharine substitute for happiness, itself almost a deeper form of sadness?

I remember hanging upside-down on one of the hospital couches and pacing up and down the long hallway, smiling cheerfully at anybody I passed along the way. The doctor informed me point-blank that I was manic. I’m happy, I said. There’s nothing to be happy about, she told me. 

Although the official diagnostic term was changed to bipolar disorder in the DSM-IV, maybe this is why some people identify more with the older term manic depression.

Vincent Van Gogh’s stay at the little yellow house in Arles, France, from February 1888 until he was committed at the St. Remy asylum in 1889, was arguably the most prolific period of his entire career as a painter. He believed that the growing disruption of his inner chaos stirred within him this compulsive creativity: The more I am spent, ill, a broken pitcher, by so much more I am an artist… a kind of melancholy remains within us when we think that one could have created life at less cost than creating art. His time in Arles culminated in an episode wherein he cut off a portion of his left ear and attempted to give it as a gift to a prostitute, requesting she keep this object like a treasure

Perhaps, in the end, this is the ultimate display of love: to give a piece of oneself to the other. To be something more than a memory, something tangible, something real. It’s a distinctly human error, this drive to be treasured.

I was sitting across my kitchen table from her. She was wearing my pajama pants and my sweatshirt, an oversized blue one that falls in folds around her thin wrists. I thought it looked better on her than it did on me. She had a look of deep consternation as she studied. I was quiet. I was watching her mannerisms, an absent-minded gesture of her fingers as she stared into the screen. The harshly azureous light of her laptop illuminated a sharpness in her almost perfectly symmetrical face, a ubiquitously beautiful face.

Perhaps it is not simply that the artistic temperament comes in tandem with emotional pitfalls, but that inner turmoil fuels the creation of art. If Van Gogh had not been crazy, would he have painted at all? Perhaps, like his brother Theo, he would have settled to be an art dealer, and never dirtied his hands with the business of creation.

Do you ever feel like I do, that you know a lot of people, but you’re still very lonely? But sometimes, maybe just when the stars align quite right, I meet someone that sees me. That looks at me like I’m not invisible.

She came up to me in the courtyard one day, a small green space in between the psychology buildings that’s mostly overgrown with ivy and shrubs. I was pacing back and forth, taking long drags and blowing smoke into the October sky. She asked me to bum a cigarette and smiled and said, I’ve seen you out here. You have a very thoughtful walk. 

You always say the right thing, Elliot. You toss out aphorisms like you’re handing out daisies, she said. (Aphorism: either a pithy observation that contains a general truth; or, a concise statement of a scientific principle.)

And you know it’s just a sonata away. And you play, and you play. And everything else goes away. Everything else goes away. Everything else goes away…

She says she finds solace in her loneliness. I wonder if I could ever come to view things the same way. I’ve been alone for a long time, since my childhood. It wasn’t a tragic childhood. But it was solitary. For my whole life, I’ve wanted to find whatever it is that breaks down this invisible wall that divides us, that brings the fragments of people together into one, into a mosaic of shared humanity that I’ve never quite fit into.

I feel like I can tell you anything, she said. You’re very understanding. I feel like you understand me. I smiled sadly.

Is talking easily about something the same thing as healing a wound? About her family, about foster care, about the scar on her thigh? She gave a small laugh, like it wasn’t really a big deal. It’s not my place to say something like are you really okay? No. I couldn’t heal her. She couldn’t heal me. I just wanted to listen, to understand you in the way I have never been understood. That’s why I write.

Balanced there, suicides sometimes meet,
raging at the fruit, a pumped-up moon,
leaving the bread they mistook for a kiss,

I thought to call JS. It rang only twice; I knew she’d blocked my number months ago. I wanted to say, but I was always there for you. I wanted to say, but I loved you. I wanted to say, but I need you, I need you, I need you. Please. Two rings. Silence.

leaving the page of the book carelessly open,
something unsaid, the phone off the hook
and the love, whatever it was, an infection.

She told me about enneagrams, a theoretical model of personality. She told me that I was a type four, the individualist, which she qualified as the suffering artist: expressive, dramatic, self-absorbed, temperamental. In love chiefly with my sadness. I wanted to say, and you are not?

I’ve changed, she says.

But why are you still here?

We read Maggie Nelson’s Bluets. Her voice grew incredibly impassioned as she read aloud: I say something about how clinical psychology forces everything we love into the pathological or the delusional or the biologically inexplicable, that if what I was feeling wasn’t love then I am forced to admit that I don’t know what love is, or, more simply, that I loved a bad man.

Sometimes I would wait in the spot where JS and I would always meet together before class, as if she’d appear there again if I waited long enough. She never did. I found myself there, cold, alone, staring at the sky in its seemingly infinite vastness. Eventually I stopped waiting.

I want to write again, she told me one day, sitting outside the front of her house, smoking a cigarette. The smoke drifted into the gray sky and faded like the unintelligible, inexplicable fragments of a dream upon waking. You should, I said. It was the best healing I knew of.


How does lithium work?

Ah, lithium; it’s been our gold-standard treatment for bipolar disorder for many years, and can work for people who have failed other drug trials. It is also one of the only drugs known to decrease the risk of suicide1. But how does it work?

It’s a bit more complicated to understand than, for example, an SSRI (which, ultimately, increases serotonin in the synapse, through a fairly intelligible mechanism of stopping reuptake). Despite knowing since 1949 that lithium was an effective treatment for bipolar disorder, we still don’t fully understand its mechanism of action.

There are a lot of signalling pathways in the brain.

One of the difficulties in determining this is that lithium goes everywhere in your body. Within the brain, it can cause an absurd number of changes through numerous signalling pathways. Like other drugs, it can cross the brain-blood barrier (an important quality for psychiatric medications, since they target the brain) but, uniquely among psych meds, it can also enter your intracellular space — hiding inside your cells, instead of just floating around in your blood.

It is excreted by the kidneys in urine, although it is also known to be excreted in human sweat and tears2. (I’ve had hyper-salty tears caused by lithium every so often.)

Lithium appears to increase the concentration of some neurotransmitters (potentially serotonin and GABA) while moderating the effects of dopamine and norepinephrine through its effects on voltage-gated channels3. This action causes a broad cascade of effects throughout the entire brain that restores balance in people with bipolar disorder. Lithium can get into any cell in your body, and it goes inside your neurons (brain cells) too. This is how it affects voltage-gated channels and moderates the activity of all neurotransmitters.

Although we usually call it a mood stabilizer, it’s not related to any other drug we put in this class, since it is not an anticonvulsant. Lithium is probably most accurately classified as a neuroprotective drug4, like memantine (a drug typically used for Alzheimer’s disease). There is even some speculation that memantine could augment the effect of lithium, due to its similar mechanism of action, but specific to the NMDA receptors.

A key point to understanding the pharmacodynamics of lithium is that lithium, in the human body, can use the same transporters as sodium. It fits where sodium should go — therefore, it exits cells through active transport systems designed for sodium, but at about half the speed of sodium. The similarity of lithium and sodium explains why lithium is excreted by the kidneys and not metabolized by the liver.

a) lithium salts; b) sodium salts

This is also why activated charcoal will not absorb lithium. Your body sees it as a metallic salt (it has a positive charge), and metals (or charged ions) are not attracted to charcoal. In addition, the similarity of sodium and lithium creates a sort of sodium-lithium ecosystem in your body; if you maintain a steady dose of lithium but drastically reduce your intake of sodium, your lithium levels can rise to toxicity.

References

  1. Kessing, L. V., Søndergård, L., Kvist, K., & Andersen, P. K. (2005). Suicide risk in patients treated with lithium. Archives of General Psychiatry, 62(8), 860–866. https://doi.org/10.1001/archpsyc.62.8.860
  2. Fraunfelder, F. T., Fraunfelder, F. W., & Jefferson, J. W. (1992). The effects of lithium on the human visual system. Cutaneous and Ocular Toxicology, 11(2), 97–169. https://doi.org/10.3109/15569529209042704
  3. Lenox, Robert H., H. C.-G. (2000). Overview of the Mechanism of Action of Lithium in the Brain: Fifty-Year Update. 61.
  4. Gray, J. D., & Mcewen, B. S. (2013). Lithium’s role in neural plasticity and its implications for mood disorders. Acta Psychiatrica Scandinavica, 128(5), 347–361. https://doi.org/10.1111/acps.12139


Dirty Dyl (Art Therapy)

Dirty Dyl (Art Therapy) by Elliot Gavin Keenan

Dirty Dyl (Art Therapy)

I.
Dirty Dyl, known for his ostentatious attitude
(typical of a manic persona)
wants to have a rap battle
in the middle
of the TV room.

Dirty Dyl, who lost
phone privileges on his first night
dialing 911:
I’m being held
hostage at South Oaks
Hospital
, he said
& then screamed &
shouted & started to cry —

I ask him if poetry will do.

II.
I read my poem in art therapy.

Soon, three other patients are
scribbling in the small hospital-issue
composition notebooks
& the backs of napkins
in pencil, crayon, or markers
(the washable, non-toxic kind)
simply
because
it’s better than passing the time
weakly magnetized by television
game shows.

III.
I know Dirty Dyl,
or at least I know his face
from a gay hookup app.
He with his
crooked swagger &
snapback caps
is Not My Type.

Only I know
he is bisexual. Only I
know that he fucks
people like
me.

Somehow,
maybe
just in Dyl’s mind,
being the keeper of
this secret
inspires
trust.

IV.
Depressives squint at their words
with tired souls,
heavy hands & looks of
consternation. It’s not
beautiful, you know — it’s
bedhead & stubble &
hospital slippers with the little
treads on the bottom —
but as they write, they are
inspired,
their eyes grow bright,

they know of ink
on the page, the spark
of a fire in their
blood & they are increasingly,
if just a little bit,
alive.

V.
Dyl went home before I did.
I saw him the other day.
He got his job back at the dining hall,
where he once came to work on shrooms.
He smiled at
me & asked,
How’s poetry?

I smiled politely
back, thinking of
a line from Whitman

(I too am not
a bit tamed, I too
am untranslatable)


Happy World Bipolar Day!

I am bipolar type 1. 🎭 That is the most severe form of bipolar disorder. (Bipolar 2 can have very severe depression, but because it doesn’t have severe mania it doesn’t progress along the same course. Something like that.) I’ve been inpatient 18 times, and I’ve been discharged from the ER a few additional times as well.

Interestingly, I don’t have what most people would think of if you said “classic bipolar disorder”. I have mostly dysphoric manias (and sometimes euphoric hypomania), so no grandiose delusions or belief that I can see the flow of energy that connects all things. Just bugs that… may or may not be real. 🐜 But, the dysphoric mania type is actually sliiiiiightly more common than euphoric (feel-good) mania in real-world bipolar 1 people, according to one study1

The main reason my bipolar is unusual is that it is so FAST. My psychiatrist describes it as “brittle” — a medical term often applied to highly unstable diabetes patients, where blood sugar skyrockets but then drops with intervention but then skyrockets again. It follows the same kind of course.

Blood sugar in brittle diabetes

Usually, I think my cycle (including both mania, which almost always comes first for me, and then depression — most bipolar people have one type of episode almost always come first, but it’s a 50/50 split which one2) is 2 to 4 weeks long. If it’s a lot faster than that it’s considered a mixed episode.

I rarely ever have euthymic (normal mood) periods and I don’t have any asymptomatic periods. (I have persistent problems with memory and executive functioning and other stuff.) 

💊 Currently every day I take: lithium, Thorazine (chlorpromazine), Zyprexa (olanzapine), Valium (diazepam), and Adderall (amphetamine salts). 💊

What causes bipolar disorder?

A lot of research links bipolar disorder to various things:
a) circadian instability, sleep problems ⏰
b) inflammatory processes in the brain 🔥
c) epilepsy 📈 — they have a lot in common, and medications used to treat epilepsy are often used to treat bipolar disorder; I think you can think of bipolar as being similar to some kind of epileptogenic brain activity but on a more macro scale. Similarities to Temporal Lobe Epilepsy include age of onset and genetic cause among other things and they do have a very very high comorbidity rate.
d) genetics 🧬 — 97% of bipolar disorder is explained by genetic variance alone and it is more heritable than autism or schizophrenia (I believe it might be the most heritable psychiatric disorder in DSM-5)

Most people get bipolar disorders in their 20s, but I got it early. I had suicidal depression sometime before the age of 10 and had my first clear hypomanic episode when I was 16. My parents were anti-psychiatry, so I wasn’t in treatment until I went to college and I almost became an emancipated minor because I was still 17 and it was that serious 🙃

Unlike autism, which is a fairly new concept (although autistic people have almost certainly existed for thousands of years) bipolar disorder is a very old idea for a distinct illness that occurs in all cultures that I know of. Other English names for it have been “manic depression” (a term I actually prefer), “manic-depressive psychosis”, “circular insanity” 🔁, all referring to a highly organized and unusually patterned occurrence of severe disturbances in mood.

That’s actually what I study now in my PhD program! I’m looking for patterns in bipolar disorder. I’m very good at patterns 🧩

References

1.  Grant BF, Stinson FS, Hasin DS, et al. Prevalence, correlates, and comorbidity of bipolar I disorder and axis I and II disorders: Results from the National Epidemiologic Survey on Alcohol and Related Conditions. J Clin Psychiatry. 2005;66(10):1205-1215. doi:10.4088/JCP.v66n1001

2. Koukopoulos A, Reginaldi D, Tondo L, Visioli C, Baldessarini RJ. Course sequences in bipolar disorder: Depressions preceding or following manias or hypomanias. J Affect Disord. 2013;151(1):105-110. doi:10.1016/j.jad.2013.05.059


Rebranding psychiatry

A lot of people with conditions that are defined in the DSM (Diagnostic and Statistical Manual of Mental Disorders) disagree with what their condition is called. In this post, I’m going to muse over changing the names of psychiatric disorders.

Manic Depression -> Bipolar Disorder -> Manic Depression

When the DSM-III was published, the DSM committee decided that the term “manic depression” had become overly stigmatized and abused. There was little to no change in the diagnostic features or description of the disorder (which has actually been fairly consistent for a very long time!), the only reason for changing the terminology was political. Many years later, I feel this has resulted in the term “bipolar” being just as stigmatized as “manic depression” ever was — except it’s even more abusable, since “bipolar” can be used as an adjective to describe many things, famously including the weather.

It should’ve been obvious that the stigma of manic depression didn’t originate from the term “manic depression” — and therefore not shocking that the same stigma followed, not the term that was used, but the people who live with the disorder. It was always the people, never the term. On top of that, I feel “manic depression” is more accurate as the term “bipolar disorder” doesn’t portray the common reality of mixed episodes and mixed mood presentation. “Bipolar” seems to imply a state of bistability, where two states representing opposite ends of one dimension (mania and depression) are cleanly and abruptly switched between; bipolar can be like this, but it is often messier.

Attention Deficit/Hyperactivity Disorder -> Executive Dysfunction Developmental Disorder

ADHD is a controversial term for some advocates and it’s understandable why. While attention and hyperactivity/impulsivity are characteristics that are used to diagnose the disorder, they’re downstream of the real difference experienced by people who live with the condition — which is developmental effects on executive functioning. Broadening the term to define it by its root cause would probably feel more accurate of the experience of living with the condition.

Inadvertently, if the diagnostic criteria were changed accordingly to reflect other developmental disorders of executive dysfunction, there may be groups of people who didn’t meet the criteria before who now do. This is something to be interested in, of course. Attention and hyperactivity/impulsivity could still be used as specifiers, and the developmental history aspects would probably still be required so that people with executive dysfunction of non-developmental origin aren’t accidentally included. Additionally, we know that autism is associated with some kinds of executive dysfunction and this change would probably blur the lines between them even more — but in reality, those lines are pretty blurry.

Autism Spectrum Disorder?

There is a lot of controversy over this one, and to be honest I don’t have all of the answers. I think “Asperger’s” was a term of limited utility because many studies could not find clear differences between “Asperger’s” and “High Functioning Autism” even though supposedly the Asperger’s group had no language delay and the HFA group did. Their outcomes, though, were the same. So it was decided that we would collapse autism into one diagnosis that represents a gradient or spectrum of features and levels of impact on the person’s life.

However, I actually agree with some advocates who say that this has proven obtrusive for people with high support needs as the common conception of autism drifts further and further from Rain Main to Sheldon Cooper. There are many people out there who no longer believe autism is a disability. I can’t fully reconcile myself with this stance when we’re talking about a nonverbal adult with an IQ of 40: this person’s life is much, much different than mine, and I genuinely want to help them in the most effective way I can. At this venture, I believe we need a term for people with high support needs. But, the options thus far have been problematic (for example, I do see the reasons why “high functioning” and “low functioning” are much too simplistic to capture meaningful differences).

In the end, the best I can come up with right now is to include Verbal IQ score as a specifier. It’s not perfect (we know IQ means something specific, and can’t be generalized to “intelligence”), but it’s one of the better indicators we reliably have of how disabled this person is, how many barriers they’re going to face to get treated fairly and with respect. And, it doesn’t create a competition where someone is more or less autistic than I am. We’re both autistic; it’s just that one of us has an IQ of 40 and that information isn’t trite. Despite the risks of increasing discrimination, I think we’ve seen with the bipolar fiasco that changing terms merely to avoid stigma (which is attached to people, not to terms) is not a good idea.


What does hyperactivity look like in adults?

I had always thought I had ADHD inattentive type. However, when I recently asked my psychiatrist (out of curiosity) she chuckled and said that, in her clinical opinion, I have the combined type.

Part of my perception may come from that fact that, due to my mild cerebral palsy, I move at a much slower pace than other people — thereby masking some apparent “hyperactivity”. To complicate matters, I’m currently taking two antipsychotics (Thorazine/chlorpromazine and Zyprexa/olanzapine) both of which can cause side effects that are phenotypically similar to hyperactivity (this is called akathisia). But how much of that is the drug per se, and how much of it is my ADHD (which may, in turn, be worsened by the drug)?

I think there’s a broader misconception at play. We simply do not know how to identify hyperactivity in developmental adults.

The image of a hyperactive child is alive and well in our collective consciousness, but what happens to us when we grow up?

First off, let’s get some facts straight. In adults with ADHD, it’s more common to have symptoms of inattention (about 90% have these kinds of symptoms in a prominent way) while only about half of adults display clinically relevant hyperactivity or impulsivity1. By implication, we can assume that the population of adults with ADHD breaks down something like this: 10% have hyperactive type, 40% have combined type, and 50% have inattentive type. Those numbers may be a little off, but it’s a good place to start.

Yet, even though it is acknowledged that adults have hyperactivity and impulsivity, these symptoms are not well understood in adults — at least, they aren’t characterized as well as they are for children. And the presentation of these symptoms changes over the lifespan. It is thought by researchers that hyperactivity decays as the ADHD child becomes an adult, while inattention persists1.

Here are diagnostic criteria for hyperactivity and impulsivity in ADHD1:

Without a doubt these symptoms intentionally mirror those used for children, with some addendums (instead of running and climbing excessively, we just think about doing it — leading to “subjective feelings of restlessness”). Somehow, some adults with ADHD have internalized our externalizing behaviors. Instead of running from wall to wall like a four-year-old, I just feel this incredible tension in my body created by Not Moving. But it’s all inside my head. You can’t see it unless you look very closely.

I can see myself in this list of symptoms, nonetheless. I fidget, I stim, I stand when I’m supposed to remain seated, I feel restless constantly, I interrupt others when they are speaking, I feel a kind of somatic pain or intense pressure and frustration when I have to wait a long time for something that’s right in front of me.

But there is an element here that we are not capturing.

Inattention and hyperactivity stem from a common dysfunction of the executive systems.

We know from literature in children that hyperactivity/impulsivity and inattention are correlated. But, it’s not so clear what the relationship is, and it really gets at the core deficit we’re trying to get at with an ADHD diagnosis: poor executive functioning and self-regulation. I can’t focus my attention, so I pace around for hours, smoking cigarettes on the patio. I feel like I have to keep moving; I constantly have to be doing something, even if I’m doing nothing. I can’t relax. That isn’t good for a child, and it’s even less so for an adult. My body feels tense and worn, like a pair of old shoes.

It turns out, too, that ADHD in adults is associated with lower socio-economic status, lower levels of academic achievement, problems with relationships, and even poorer driving ability and more traffic violations1.

Not long ago children with ADHD were presupposed to exist in a liminal state: it was thought that ADHD was a disorder of childhood, and that it diminishes with developmental advancement. Yet research (including various brain anatomy, neuroimaging, and genetics studies) is showing that this is not the case1.

Ironically enough, it’s time to turn our attention to adults with ADHD. Although it does make some sense that classic symptoms of hyperactivity decline with age, I am interested in how hyperactivity later manifests in adults who no longer fit the typical, child-centered definition of hyperactivity.

Personally, I think inwardly-turned hyperactivity may be one of the driving forces behind high levels of depression and anxiety seen in adults with ADHD. Around half of adults with ADHD have had one or more major depressive episode, and around half of adults with ADHD have one or more clinical anxiety disorder2.

There’s also a fascinating overlap with bipolar disorder, which may be a blog post for another day!

Are you an adult with ADHD? Have you ever met criteria for hyperactive or combined type ADHD, either now or as a child? Share your experiences!

References

  1. Wilens, T. E., Faraone, S. V., & Biederman, J. (2004). Attention-Deficit/Hyperactivity Disorder in Adults. JAMA, 292(5). https://doi.org/10.7326/acpjc-2016-165-2-010
  2. Sobanski, E. (2006). Psychiatric comorbidity in adults with attention-deficit/hyperactivity disorder (ADHD). European Archives of Psychiatry and Clinical Neuroscience, 256(SUPPL. 1), i26–i31. https://doi.org/10.1007/s00406-006-1004-4

After a suicide attempt

Caution: this post contains explicit discussion of suicide

Two days ago (on September 10th) was World Suicide Prevention Day. Although it is important to address prevention of suicide attempts, the strongest predictor of a fatal (or “completed”) suicide is a history of previous, non-fatal suicide attempts. The risk factors for suicide attempts are more diverse and include: family history of suicide, early onset of bipolar disorder, extent of depressive symptoms, increasing severity of affective [mood] episodes, the presence of mixed affective [mood] states, rapid cycling, comorbid Axis I disorders, and abuse of alcohol or drugs1

Most suicide prevention effort focuses on people who are naive to psychiatric treatment and have reached a crisis point: people who don’t already have a psychiatric point of contact, and usually people who have never been treated in an inpatient setting before. In my experience, most people do not continue using crisis lines or similar services after they have been hospitalized once. Surmounting the fear and stigma around hospitalization itself is a primary reason crisis lines exist. Crisis lines are staffed by severely underqualified volunteers, who are usually following a script, and only have two action moves: call an ambulance, or tell you to go talk to someone else (sometimes your health insurance company). Yet, people find calling a crisis hotline less formidable than simply admitting themselves voluntarily.

But what about those of us with chronic illnesses, with volumes of psychiatric history, who have been admitted many times? This service is clearly not meant for me. If I spoke to a crisis line on what to me is an an average day, I might find myself being dragged to the ER and with an $800 ambulance fee to boot. There is no exception for chronicity. The stakes of a mistake are high, and the crisis line operator is equipped with a high school diploma.

There’s a gap between services for first-episode patients and services for profoundly disabled people who live in an institutional setting. After my close-to-fatal suicide attempt about two and a half years ago, I had to navigate what exactly life looks like after a serious suicide attempt. I consumed an amount of lithium equal to the 50% lethal dose in rats, and an antidepressant that is also a potent anti-emetic (anti-vomiting) drug. I knew I would absorb more of the lithium if I delayed the onset of (inevitable) severe vomiting.

I was hospitalized for only 16 days. The attending physician treating me thought I should go to a residential treatment program, but I was supposed to be at an academic conference and I begged to be realized in time to go. The head of the clinic evaluated the situation and decided to release me. I was discharged within hours of my flight to Europe. After the conference, I was enrolled in a partial hospitalization day program. The official length of the program was 8 weeks; I was probably enrolled for 4 months. My psychiatrist met with me nearly every day.

We tried a lot of medications, but for quite some time I was not permitted to take lithium. This was unfortunate, because lithium is probably the single most effective drug I take. I have cycled through almost every atypical antipsychotic: Seroquel, Abilify, Vraylar, Zyprexa, Saphris, Geodon… I’m sure I’ve forgotten something, it’s more than I can keep track of. I tried Depakote and Lamictal. Nothing has the same effect as lithium. Ironically, lithium also has a specific anti-suicide effect.

I continued to be suicidal throughout and beyond the partial program. I am lucky that my psychiatrist works well with me.

Chronic suicidality is probably more common than people realize. It doesn’t appear in the media. It’s taboo. You fear to acknowledge it exists somewhere. When we talk about improving mental health services, let’s give a little more attention to the people for whom posting a status update with the s-word in it is reason to panic and report it to Facebook headquarters.

References

  1. Hawton, K., Sutton, L., Haw, C., Sinclair, J., & Harriss, L. (2005). Suicide and Attempted Suicide in Bipolar Disorder: A Systematic Review of Risk Factors. The Journal of Clinical Psychiatry, 66(6), 693–704. https://doi.org/10.4088/JCP.v66n0604


Bipolar disorder and media consumption

Recently, on Twitter, I confessed that I had not been able to complete reading NeuroTribes (a very interesting book, and also a lengthy one). The other person insisted that a PhD student should be able to read a book and accused me of lacking academic integrity — basically, that I am lazy and don’t deserve my PhD.

I’m here to say that attitude is inherently ableist. But to give the benefit of the doubt, perhaps most people don’t know that bipolar disorder actually can affect your ability to read. I learned to read early as a child — I was a prolific consumer of text, and I had a college reading level in elementary school (this is called hyperlexia). But after being medicated for bipolar disorder, my ability to sustain focus and momentum while reading a long document has been very limited.

Lithium is probably the biggest offender. It kind of affects how you see words on the page — like a pseudo-dyslexia, the words seem kind of blurry and distorted. It can be impossible to read full books. I can still read journal articles because they generally have a defined structure and an abstract. I can also read poetry, which I enjoy. I recommend seeking out these kinds of texts if reading is something you struggle with.

Most of all, I want you to know that this is common, you are not alone in having an acquired inability to read and you still deserve your career, whatever that may be. It’s not a matter of “intellectual thoroughness”; it’s part of a disability, and it’s more common than you think.

I also find it difficult to watch videos, TV, or movies. The information conveyed through video media covers many modalities — sound (music), speech, visuals, movement (spatial), and the overall plot you’re supposed to be following. Sitting for the length of a movie is hard, but it’s also just hard to follow so many things at once. My brain gets overwhelmed with too much information of different kinds to process (evidence of poor sensory integration, a symptom of autism). But it helps to reduce the overload by using captions (combining speech with visuals, thus reducing the number of information modalities) or watching something animated, which compresses the demands of visual and spatial information greatly.

Have you ever had trouble consuming media?

What strategies have you used?