The punishing truth about campus mental health policies

Recently I have seen several articles critical of Northern Michigan University, where last year students received emails warning them that talking about their struggles with mental illness could result in removal from the college  (see link below). I’ve been following this story with quite a bit of interest, because as a college student I was profoundly affected by campus mental health policies, and as a faculty member I’ve served on the committee charged with creating such policies.

What I think is missing from discussion of this news story is recognition that students who want to stay in school while suffering from mental illness are ostensibly punished for suicidal ideation, nonsuicidal self-injury, and other aspects of their disorders (such as eating disorder symptoms) in colleges everywhere. In fact, the only thing really striking about the NMU case is that the school’s punitive policies had been expressed to the students directly, transparently, and in writing, rather than in the usual stealth ways.

At the college where I work, for example, students aren’t explicitly prohibited from expressing self-destructive feelings, but there is a policy that justifies a mandated (involuntary) leave of absence for students with mental illness if they 1) place their own health and safety at risk, or 2) cause others ‘substantial distress’ above a ‘normal, everyday’ level, or 3) are returning from a psychiatric hospitalization. While #1 is well-intended, it isn’t objectively defined, and students find it unfair that some forms of self-destructive behavior (such as nonsuicidal self-injury or eating disorder) result in much more harsh consequences than forms of self-destructive behavior with less mental illness stigma (such as consuming dangerous amounts of alcohol). What #2 means to a student with mental illness is that if your roommate worries enough about you, you might have to leave school, whether or not you want to. And #3 means that if you seek help at an emergency room or elsewhere in order to get through a tough time, you might not be welcome back on campus when you feel the danger has passed.

The language of our policy really troubles me (and I’m sorry that my need for anonymity makes me unable to directly quote it for you). For example, I wonder whose standards get to determine what constitutes a ‘normal, everyday’ level of distress, since it certainly isn’t going to be the level of distress that students suffering from mental illness live with every day. Is the college really requiring students who are disadvantaged by extraordinarily difficult lives to put on a pretty face about it for the sake of their luckier peers?

But perhaps what is most disturbing is how easily a school that considers itself modern and inclusive can get away with legitimatizing bias against people with mental illness. At this college, students with mental illness who have violated no conduct codes nor fallen out of good academic standing can nevertheless be banished from the college just because others find their presence upsetting. The campus community would strongly object to a policy like this if it were directed against students on the basis of their gender, sexual orientation, race, ethnicity, physical disability, etc. It would even oppose applying this policy to students who persistently cause others significant distress by expressing abhorrent ideas. By adopting this policy specifically for students with mental illness, the college is telling these students that they cannot count on same basic rights as anyone else. And though the broader community doesn’t seem to care or notice, the targeted students really do take this message to heart.

I struggled with mental illness for my entire time in college. And one tearful night mid-semester in my third year, when my residence hall leader asked if I had any suicidal thoughts, I answered honestly. As a result I was faced with eviction, which unsurprisingly did wonders for my mental state, and I “voluntarily” withdrew from school because I had few other options. I still have a lot of questions about what happened back then. Did my undergraduate institution genuinely act in the interest of its students when it required me to decide between denying my suicidal thoughts or being forced to leave? When I admitted feeling suicidal that night, was I asking to be removed from college and placed in the mental health system for my own good? Or did I just make a stupid mistake that dramatically changed years of my life in a largely unwelcome way? Decades later I’m still not sure.

There are sometimes very good reasons to require students to take a leave, to protect those who aren’t able to freely choose protection. Indeed, my own sad story might have been even worse if I hadn’t been forced to withdraw when I did (we will never really know). Regardless of the intent of mandated mental health leave policies, though, the students faced with them quite reasonably feel disenfranchised; and the fact that these students realistically fear being punished if the college knew the extent of their suffering prevents them from getting help. I don’t know what the answer to this problem is, but the problem is far more complicated and widespread than either the administrators or the students closest to these policies are going to be willing to admit.

Reference: http://nymag.com/scienceofus/2016/09/a-school-is-threatening-to-punish-its-suicidal-students.html?

Surviving until I could make my life worth living

I’ve spent most of my life wishing I were dead, and as a college student I tried to kill myself. The story of my survival, and of my promise to never try to take my life again, is posted today on the Active Minds blog, here:

http://activemindsblog.org/suicide-prevention-month-a-life-worth-living/

Re-thinking self-injury

Deliberate self-injury is puzzling to many people. Heck, it is still somewhat puzzling to me — even having experienced it – for reasons I’ll explain below. Of course the experience is unique to each individual, so I’m not saying that my own is necessarily typical, but I think it may be helpful to talk about anyway. Also note that I am deliberately going to omit the details about what I did to hurt myself, because I don’t think those details are helpful to talk about.

There have been two distinct periods in my life when I was frequently self-injurious. One was during my third year of college, and the other was over twenty years later. Not coincidentally, these are also the two periods in my life in which my depression eventually became so severe that I required hospitalization. I didn’t have more than passing thoughts about hurting myself during the decades in between, or in the years since.

I only started having problems with self-injury after I survived a suicide attempt and promised never to try to kill myself again. When self-hatred and self-disgust were so strong that I really wanted to die, injuring myself just seemed like the healthier of the only two options I could think of. In this (extremely limited) sense it worked, and in its aftermath I often felt more welcome to remain part of the physical and social world.

To those who would dismiss self-injury as a form of attention seeking, I’d counter that I almost never told anyone about what happened, and that the only times I did were in a proactive effort to stop. I also want to emphasize that there are biological factors involved. In my own experience, I think among the reasons I had such powerful urges for self-injury at these two distinct points in my life were things like extreme sleep deprivation and going through withdrawal from antidepressant medication (Nardil).

What is most inexplicable to me about my self-injury experiences is that they really felt as if I were being taken over by forces much more powerful than myself.  I also felt as if my self-hatred and self-disgust were strong enough to destroy the whole world if not given a more limited outlet.

Looking back now, it is clear that the thoughts/feelings I had about self-injury, and about suicide being its only alternative, weren’t quite realistic — and I’d like to think that next time I’d be less inclined to consider self-injury as a readily available outlet for my internal pain. Instead I’d want to consider other possible ways of making it through each hour at a time, ways that would ultimately make me feel better able to cope. For me this involves promising myself that next time I won’t work so hard to hide my struggle with self-injury, but instead ask carefully selected people to help distract me, wait with me, and guide me through those times. Though my depression has currently receded and self-injury is now quite far from my mind, I want to learn from this especially difficult aspect of my past to be better prepared for the future. Because sometimes life don’t leave you alone.

References

“…It’s an art to live with pain,… mix the light into grey,..
Lost 9 friends we’ll never know,.. 2 years ago today
And if our lives became too long, would it add to our regret?
And the young, they can lose hope cause they can’t see beyond today,…
The wisdom that the old can’t give away, Hey,…
Constant recoil…Sometimes life don’t leave you alone…”

Love Boat Captain by Pearl Jam (2002)

Medication sickness

I’m “sick” today — not with anything contagious — but with flu-like symptoms from trying (again) to decrease my dose of Mirapex. I had tried this last month and chickened out when I started feeling so lousy, but I’m trying again now in order to be finished with these withdrawal effects before classes start. (I’m not necessarily aiming to go off of Mirapex completely, but hoping that lowering the dose might stop me from compulsively grinding my teeth all day, a problem that I’ve clearly developed as a side effect of the drug.)

As I wrote recently, I find the temporary side effects of ketamine to be minimal compared to what I’ve experienced on FDA-approved medications. So while I have my Mirapex sickness on my mind, I thought this might be a good time to describe what I have been through with some of the medications I’ve tried. After all, feeling sick is a relatively mild withdrawal effect compared to the intense self-injurious urges I experienced while withdrawing from Nardil, and remembering this may help me maintain a sense of perspective.

  • Abilify: Pronounced weight gain (and when combined with Nardil, an inability to sleep for more than 2 hours at a time even with sleeping pills).
  • Ambien: After about 10 years of taking it, I suddenly started doing odd/scary things while asleep, like trying to cook or dye my hair.
  • Effexor: Compulsive tooth grinding, chronic GI problems, tension, sleeplessness, and headaches if I was even slightly late to take my next dose. Years ago I spent several months trying to slowly taper off of Effexor, and still, the headaches I experienced were unbelievable. I was only willing to use Effexor again when my doctor promised that to go off of it, I could first switch to a related medicine not associated with such severe withdrawal. (She had me switch from Effexor to Fetzima, and then withdraw from that, and this process was fine.)
  • Emsam (the MAOI skin patch): I was allergic to something in the adhesive, so I’d get an itchy red rash under the patch that would remain several days after the patch was removed. After 6 weeks of using Emsam I had patch-shaped red rash marks pretty much everywhere.
  • Imipramine: persistently dry mouth and sleepiness (with no clear benefits)
  • Mirapex: compulsive tooth grinding, flu-like symptoms while reducing the dose
  • Nardil: For a while this medication really helped me, and having limited options I was on it for years despite seriously annoying dietary restrictions and numerous side effects. My side effects included sudden leg cramps while sleeping, micro-sleeps during the day, fainting upon standing, hands and feet losing circulation (one time resulting in a bone fracture in my foot), hospitalization for a blood-pressure spike caused by eating soy sauce, intense dreams, chronic GI problems, and trouble sleeping. The withdrawal effects were also unexpectedly severe; I experienced extremely intense urges to injure myself, intense enough that I often couldn’t resist. The timing of this was very clear: several days of self-injurious behavior started each time that I decreased my Nardil dose.
  • Navane: Unexpected lactation requiring carrying around an extra jacket.
  • Parnate: Feeling feverish and weak for about 1-2 hours after taking each dose. And intense dreams that had me frequently yelling and kicking in my sleep. I thought this drug helped so I stuck with it for several months, but the side effects never went away.
  • Paxil: Nausea, feeling emotionally numb and really spaced out (with no clear benefits)
  • Prozac: Anxiety/tension (and no clear benefits)
  • Wellbutrin: Trouble sleeping. And also a seizure, that happened right in the middle of giving a presentation during graduate school.

Ultimately, medications have been helpful for me — sometimes a little and sometimes a lot. But living with this stuff sure isn’t easy.

Seeing it

“For a long time I’ve felt certain that my life is simply not worth what it costs to keep going, but I’m staying here to fulfill what I see as my obligations.”

These were my closing words to an unsent letter I wrote a few years ago. The “obligations” that the letter refers to were to never put the people I care about through the pain of my suicide. I had survived a suicide attempt in college, but over time I had resolved to never kill myself no matter how much I wanted to.

Re-reading my letter now I’m not surprised that I wrote what I did, since I’ve felt like a burden for nearly all my life and have had chronic depression with recurrent suicidal desires.

What does surprise me, though, is the context in which I wrote this.

First, I wrote this in the early months of a depressive episode that eventually became so extremely severe that I guess I had forgotten just how bad it had been even the year before.

But more than that: I wrote this letter on the day that I got my job as a college professor, a job I had been working towards for two decades. Most of the letter describes how the job offer was wonderful and far exceeded my greatest hopes. But as a person who has suffered from depression since childhood and who was several months deep into a depressive episode at the time of my job interview, even having such a clear cause for celebration could not stop me from feeling that I’d rather be dead.

When you’re living with depression, in the whole thick mess of depression, you know your own depression but can’t really see it — because it becomes a part of you and a part of your vision. Looking at this letter now, I actually see it.

Shit clueless parents say to their children with mental illness, part 1

In college I had finally started to get help for my mental illness — because I no longer needed my parents’ permission to do so – but still being in close contact with my parents, I faced a lot of opposition to my efforts (e.g., my father said that I was being selfish and lazy by paying a professional to talk to me rather than change myself into someone worthy of real friends). Now, my father has said a lot of shit to me over the years, but I’m thinking that some of what he said to me during this time was truly exceptional.

These might be my father’s top three:

  1. “You are NOT taking a semester off from college. You want to work minimum wage? I’m not going to let you ruin your life like that”.

I was going to an ivy-league school and very academically motivated, but during my first year in college I was so severely depressed that I was not appreciating any of it, and often couldn’t even make it to class. I had told my parents that rather than wasting money and credits on courses that I was getting so little out of, I might be better off taking a leave of absence for a semester to work and get my health together. Looking back it is obvious that taking a semester or more off would have been the right thing for me to do, but my father had some image of the ‘perfect college experience’ that meant four consecutive wonderful years and he was unwilling to let go of that dream. And despite having a Ph.D., he was unable to grasp the basic distinction between leaving college for a semester and dropping out forever. Of course, I got my leave of absence two years later, when my mental health problems had become a crisis and I had to withdraw mid-semester for two months of hospitalization. But too bad that it ever had to come to that.

  1. “You should exercise a lot while gaining weight, so it becomes muscle and you won’t get fat”.

By the end of my second year of college, the administration had taken notice of my worsening eating disorder and decided that I would only be allowed to return to classes in the fall if I had gained enough weight to no longer be an imminent health risk. So I spent the summer (at home) seeing therapists and nutritionists with the explicit goal of gaining weight. Somehow my father missed the message that I needed more body fat to stay alive, and that the possibility that I’d get fat should have been the least of his concerns.

  1. “You want to kill yourself? Why don’t you just do it already!”.

A month after I returned to college for my third year everything went from awful to worse. Though I really didn’t want to live, I had promised myself not to take my own life and often struggled to resist that urge. My father later explained that he only said what he did to “snap me out of it” (whatever that means). I don’t think I even need to explain how fucked up this is. But a meme I saw recently is applicable here: ‘The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are.’

Here is where you can read part 2 of “Shit clueless parents say”: https://sayingwhatgoesunsaid.com/2015/08/10/shit-parents-clueless-parents-say-to-their-children-with-mental-illness-part-2/

Are we getting something out of this all-encompassing trip?

I am in my late 40’s with a Ph.D. in clinical psychology, working as a relatively new college professor. Most people in my position are nearly 20 years younger than me, but that’s because along the way I lost a lot of time.

I first remember long periods of inconsolable despair at age 4.  I was prescribed antidepressants at age 8 — and this was in the 1970s, when the available antidepressants were more dangerous and it wasn’t common for people to take them, let alone talk about them. My parents threw the prescription away and also refused to let me go for counseling. I kept getting good grades, so my parents probably figured my problems must not be too serious. My father said it was just that I acted too weird, and he thought he could cure me of that with enough criticism and frequent fits of rage.

Leaving my high school friends for college was very hard. I started going to the college counseling center, and they recommended therapy several days each week. (My father said I was being selfish, wasting money paying someone to talk to me because I couldn’t make real friends.) After a period of starving myself and experimenting with faster ways of ending my life, I decided it was time to try medication, but it didn’t help me as much as I needed it to. Late at night I would sometimes try to study in public areas, because I was afraid that back in my room alone I would be unable to fight the urge to hurt myself. My college eventually decided that it didn’t want responsibility for me, and I was no longer allowed to live in the dormitories. With nowhere else safe to go, I admitted myself to the hospital. It was clear that moving back home would not be good for me, but I was not ready to live completely independently. So I was eventually discharged from the hospital to a residential program for adults with severe and persistent mental illness. From there, I resumed college classes and applied to graduate school.

Over the next 25 years I tried just about every medication and psychotherapy available. I was never really free of depression, social anxiety, OCD, and nightmares — but usually managed to get by. MAOIs and IPT both helped me through some very rough times. Then a few years ago I was offered my dream job — a tenure-track faculty position in an excellent department — and I decided to take it. My symptoms got so much worse, and I was hospitalized. Though ECT caused memory problems it did help for a while. But after that I was back to hating myself and unable to get out of bed, even while taking a ton of medication.

Ketamine treatment

Since the spring of 2015 I’ve been regularly receiving ketamine infusions (in addition to some other medications, therapy, nutritional supplements, and exercise). Within days after my first infusion it was as if a light had been switched on somewhere inside that had been always dark before. Suddenly I was able to feel at peace with myself, and do things, without paralyzing self-doubt. Ketamine treatment isn’t covered by insurance, and the effects of each infusion only last a few weeks, but since this actually works I plan to stick with it until I have other options. To stop hating myself after 40 years is not only really expensive, but priceless.

I live quite far from the nearest ketamine clinic so about once each month I travel all day to get hooked up to an IV bag, and let the medication drip into my hand while spacing out and listening to “Present tense” on repeat through headphones. The infusions are typically very peaceful and pleasant. Sometimes I feel my fingertips against the chair arm and can get fascinated by that. Or stare at my hands. Often I find that something will make me laugh, just because it is a little strange. Like when I see the leaves on the tree outside blowing, and for a split second they look like they are waving at me or waving along with the music, though I still know that they really aren’t. After an hour it feels like I’m waking up, feeling progressively more alert and less dream-like. And an hour after that I feel enough like my usual self to leave and get on a crowded train.

At my treatment session last week my doctor and I decided to try increasing the ketamine dose to see if maybe this might help the benefits last longer. This was the first time that I’ve felt more than mild psychedelic effects and it was so similar to movies about psychedelic trips that it was almost like a cliché. I thought I could see myself as a tiny dot among millions of moving and flickering dots. I could see the dots interacting with each other, and I also saw some of them disappear. I was certain that this image represented life, and that the only significance of each individual dot was what it meant to the others around it. But soon after seeing what I thought was the meaning of life, I saw my own dot disappear. I sat there stunned, believing that my little story was suddenly over.

I realize that what I experienced under the influence of ketamine last week was kind of like a dream, and no more important than a dream, but it felt so much more real and has lingered in my thoughts. All week I have found myself anxious about my mortality (which is highly unusual for me), and also grieving for the years I lost.

I wish I could tell my younger self to hold on and believe that a life worth living is possible. Not that living with my illness is easy — even now that I’ve finally found a treatment that really helps, maintaining my mental health takes a lot of work. But the difference is that now my life actually matters to me. I want to stay and make my time here count.

References:

About ketamine treatment for depression:

About IPT: https://en.wikipedia.org/wiki/Interpersonal_psychotherapy

Present tense (Pearl Jam, 1996) : https://www.youtube.com/watch?v=Tlx3GPsRD9M

Present tense (Lyrics)

Do you see the way that tree bends?
Does it inspire?
Leaning out to catch the sun’s rays
A lesson to be applied
Are you getting something out of this all-encompassing trip?

You can spend your time alone, re-digesting past regrets, oh
Or you can come to terms and realize
You’re the only one who can’t forgive yourself, oh
Makes much more sense, to live in the present tense

Have you ideas on how this life ends?
Checked your hands and studied the lines
Have you the belief that the road ahead, ascends off into the light?
Seems that needlessly it’s getting harder
To find an approach and a way to live
Are we getting something out of this all-encompassing trip?

You can spend your time alone re-digesting past regrets, oh
Or you can come to terms and realize
You’re the only one who cannot forgive yourself, oh
Makes much more sense, to live in the present tense

Let’s see tomorrow*

*There is indecipherable chanting at the end of the song, and “let’s see tomorrow” is just how I hear it.