Are you there, Serotonin? It’s me, Suzanne.

[Trigger warning for suicide ideation, depression, mental illness, stigmatization]

I am a proud member of Prozac nation.

I refuse to solve my problems and deal with unpleasant emotions. I don’t treat my depression with good ‘ol hard work and bootstraps. I take the easy way out. I medicate. My moods are chemical, my personality is a façade created by neurotransmitters.

Ah, manufactured happiness.

***

All jokes aside, I love it when I’m told that treating depression with medication is the “easy way out.” Nearly forty thousand people commit suicide every year in the United States, and approximately 60% of those people suffered from major depression. Moreover, 15% of the population will suffer from clinical depression at least once in their lifetime, and 30% of clinically depressed people attempt suicide.

I’m sorry, what, exactly, is  the problem with using an “easy way out” of depression?

The idea that antidepressants are a lesser treatment is rooted in the narrative that depression is a personal failure rather than a disease. If depression is a personal failure, then you can correct it through hard work. Taking a pill to “solve” your mistake is a cheat, an unfair shortcut to redemption.

One of the consequences of ableism is our collective distaste for vulnerability, whether of the body or of the mind. We want to believe our bodies are under our own control. We especially want to believe that our minds are under our control. The idea that our brains could suddenly get sick, and we wouldn’t be able to switch them back to healthy is, frankly, terrifying.

So we lie to ourselves. We tell ourselves that depression doesn’t exist, that it’s an invented disease, that it’s just people complaining too much about bad moods, laziness or hard times. It’s easier than confronting the reality – than realizing that yeah, there are mental, and we can’t magically control them with the flip of a mental switch.

Unfortunately, the “make loud noises and hope the problem goes away” tactic isn’t exactly helping. In a 2011 study on why people with depression don’t seek treatment, sixteen percent said they perceived treatment as ineffective, while ten percent cited stigma. 21.2% of the people who drop out of treatment do so because of stigma, and 21.1% do it because of perceived ineffectiveness.

So yeah, when you start denying that antidepressants work at all, or when you say that depression is a made-up disease and the people who have it are weak… there are consequences to that.

***

This discussion isn’t theoretical for me. When I started taking antidepressants, I, like many people, didn’t believe they worked. I thought the “hard work” of therapy would fix my depression, not the “quick fix” of medication. Thus, when the antidepressants did nothing, I didn’t bother to alert my doctor.

It took a long courtship to reunite me with antidepressants. Our reunification took a the form of a classic, 19th century marriage plot:  we had to go through misunderstandings, affronts, passions, separations and despair before we finally found each other.

Pride and Prejudice, Elizabeth Bennett, Mr. Darcy, Ball scene,

1. Misunderstandings: Fluoxetine, part 1

It was my first year in college. I hadn’t wanted to go to my university – McGill – because I thought the school was too big and I would be isolated and alone.

And, since  17-year-old me was quite prescient, I was precisely right! I did feel isolated and alone.

I did have one small ray of light: I was in a play! Whooo! Unfortunately, the play had an end date. And on the aforementioned end date, I went back to my dorm, fell asleep, and didn’t come out for three months.

Okay, so I’m glossing over some details. I did leave to get food and go to the bathroom. But I didn’t go to class. I didn’t go outside. I stopped reading. I stopped contacting the outside world. I spent my days lying in bed, listening to music, and watching every single episode of America’s Next Top Model.

I wasn’t sad. I wasn’t filled with angst. I wasn’t even anxious – which, if you know me at all, is pretty rare. I was just numb. Numb, numb, numb, numb, numb. WHEEEEEEE, numb.

Hyperbole and a half, Allie Brosh.

Hyperbole-and-a-half, characterizing me exactly (http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html)

Sure, I was failing all my classes, ruining my academic career, spending my days in bed and doing absolutely nothing. But I wasn’t worried!

I wasn’t anything at all.

To me, nothing was wrong. I was just incredibly lazy. That was the problem. Any day now, I would snap out of my incredible laziness and start working again. Bootstraps! Yes sirree. (This strategy did not work)

Three months in, I finally told my mother that I might be a “little depressed.” Because my mother knows that I have an *incredible* gift for understatement, she interpreted this correctly as “I might be really really depressed, oh god help.”

The mental health clinic at my school had a three-week waiting list for an appointment, and my health care coverage in Quebec was crap, so my parents flew me back to the United States to see a doctor. I took the two-page test medical practitioners give you when they think you’re depressed (some of you know exactly what I’m talking about) and my doctor took one at it before he said: “Uh… yeah, you’re pretty fucking depressed.”

Except he didn’t use the word “fucking,” and he did use the phrase “major medical disorder.”

Then the Doctor recommended that I take a medical leave from school (before I failed allllll my classes) take antidepressants, and start therapy. I was worried that therapists wouldn’t think I was depressed enough to take a medical leave (remember, I still thought I was just a “little” depressed), but the two therapists I saw back home couldn’t sign the “This student should really take a medical leave of absence” sheet fast enough.

Meanwhile, my doctor put me on one of the most common antidepressants: Prozac, AKA Fluoxetine.

Fluoxetine is an SSRI – a Serotonin Selective Reuptake Inhibitor. The way SSRI’s work is by inhibiting the reuptake/ reabsorption of serotonin, a neurotransmitter that regulates mood. Because your brain isn’t “reuptaking” the serotonin, there’s more of it around, which leads to more ‘happiness.’  At least, that’s the theory.

serotonin

My buddy Serotonin!

I took a medical leave from McGill. I came home. I took antidepressants. I started therapy. Therapy was good. Not being in school was good. Being home was good.

Fluoxetine… was not so good.

“It works pretty fast,” people told me. “It was pretty instant when I took it.”

Well… I wasn’t feeling anything. Not after two weeks. Not after six weeks. Not after two months. Therapy and lack-of-school were making me feel better, but I didn’t feel like the numbness – the nothingness – was gone.

Hyperbole and a half, Allie Brosh

Hyperbole-and-a-half again, encapsulating the feeling perfectly.

Then again, I’d never taken antidepressants before – and frankly, I didn’t really think they “worked.” Maybe the effect was really subtle. So I never brought the “not working” part up to my doctor.

When I went back to McGill at the end of the summer, I fell straight back into depression.

So much for fluoxetine!

Mr. Darcy, Pride and Prejudice, Marriage Plot, Elizabeth Darcy

Told you. It’s a complicated courtship.

***
This time I made it through the semester – somehow. It was a pretty terrible semester.

During the winter break, I found a new, less stressful, living situation. I decided to take only classes I thought I’d enjoy. And I stopped taking fluoxetine. I did not consult a doctor – I was in Montreal, and I didn’t have any medical authority to turn to. I just knew that the fluoxetine wasn’t doing anything. So I stopped.

Things got better. I lived in a good place; I went to interesting classes; I started making friends. By the end of the semester, I was in recovery.

***
So hey! you might be thinking. Doesn’t this story prove that antidepressants don’t really work, while therapy and changing your life circumstances does? You took antidepressants and things got worse, you stopped them and things got better. Case closed, right?

Not exactly.

Here’s the thing about depression: we haven’t quite figured out how the fuck it works. Some of it has to do with brain chemistry, but some of it is definitely due to environmental or psychological factors. And we’re not sure how those three interact, or which ones to “treat” first.

Let’s look at those factors in the case of my depression.

1. Environmental: I was in a university I hated. I had no support system. I had no community. I had no friends. There was nothing to be happy about.

2. Psychological: Without getting into a ridiculous amount of details, one of my parents was emotionally abusive (or, to quote my first therapist: “your parent is a real bully, huh?”), and the emotional abuse caused me to adopt some pretty maladaptive lines of thought. Like blaming everything on myself; thinking I was worthless, hating myself etc. The usual.

So these environmental and psychological factors were definitely fueling my depression. And then we get to:

3. Weird brain chemistry stuff.

Hey, look! This is what depression looks like.

We know that depression changes a person’s brain (see above). We think it might have something to do with the neurotransmitters that regulate mood, like serotonin and dopamine. It’s not entirely clear whether your brain chemistry gets weird, so you get depression, or whether you get depression, and then your brain chemistry becomes weird. Maybe it’s both. Maybe it’s different for different people. Probably it’s different for different people.

But right now, science is still a bit baffled. Yes, we’ve got antidepressants, but no one’s quite sure how they work, or why they work. We know they’re doing something, because they help a lot of people. But they’re also totally useless for a lot of other people. Some people respond terribly to one antidepressant, but do great on another one.  And nobody’s sure why! But we’re dealing with a pretty terrible illness, and if a tool works, we’re going to use it, even if we’re not sure exactly what it’s doing.

(This is, obviously, a massive oversimplification of the current state of depression studies)

So, to recap: since environmental and psychological factors were a big part of my depression, changing them – finding a better living situation, going through talk therapy, surviving the hell of my second semester – made a big difference. Enough of a difference that I went into depression-recovery even though the meds I was taking to target my brain chemistry weren’t working.

Here’s the flip-side: it took me over a year-and-a-half for me to recover from my first depression without the help of medication. And it was not a fun year.

Still, you think: all the medication and neurotransmitter stuff  I just talked about? That’s all theoretical. The proof is in the pudding. You got better without antidepressants!

Just wait. You’ll see: there’s more to this story.

***
 Affronts – Fluoxetine, part 2:

The next two years went pretty well. I switched my major, fell back in love with school, made friends, participated in a play, found my community. When I had the time and resources, I went to therapy.

And then: the migraines.

My migraines have always been problem, but in my junior year at McGill, they became a plague. I got them almost every day: blinding pain in the back of my skull, accompanied by dizziness and aching muscles.

I decided that the solution to my migraines was to overhaul my diet. Protein, I thought, was the key. Cut out all those carbs and sugars, and eat miles of protein instead. Oh, and I should start an exercise program. An hour at the gym every day.

I told myself these changes – the diet, the exercise – were for my migraines. But deep inside, I knew the truth: convinced I was too fat, I wanted to lose weight.

The migraines got a lot worse. Shockingly worse. Before I started going to the gym, my migraines would always go away with a good night’s sleep. Now, I would come out of the gym and have migraines that lasted for days. Nothing made them budge – not medication, not sleep, nothing.

And even though I knew the exercise was causing the migraines, and the diet was making it worse… I kept going.

That’s when the shit hit the fan: my migraines became light-sensitive.

I would go to school feeling fine, and after an hour under fluorescent lights, I would have a migraine bad enough that I’d need to go home immediately. I couldn’t handle any light – I closed all my shades, turned off all the lights, switched my computer off – and spent the day in the dark. I couldn’t do anything. When I tried, the pain would be so bad that I would start throwing up.

Not surprisingly, these circumstances took a psychological toll. Combine the pain from the migraines with the fact that I couldn’t do anything and you’ve got a recipe for a very unhappy Suzanne. Before I even realized what was happening, I’d landed back in the middle of the town of Total Numbington.

Once I stopped going to the gym, started eating better and kept spending all my time in the dark the migraines got better subsided. My residency in the town of Numbington, however, was far more permanent.

In a repeat of my first depression, I spent most of my time in bed, reading piles upon piles of X-Men: First Class fanfic. Fortunately, this depression didn’t seem as severe as my first, so I was still able to go to class and do work. My grades held steady.

I did not see a doctor in Montreal.

When I finally came home to Wisconsin, my parent had switched health insurance plans, and I could not longer access my long-term therapist or doctor. My new doctor asked me almost no questions before diagnosing me with depression again. Then she asked me if fluoxetine had given me any side effects when I’d first taken it.

“None that I noticed.”
“And did it help?”
“I’m not sure. I didn’t feel anything, but maybe it was subtle.”

She started me on fluoxetine again.….I am not a good advocate for myself in health situations. At all. Because I should have stopped her there and said “no, fluoxetine didn’t work, we need to try something else.” But since I still didn’t realize that you’re actually supposed to * feel * the effects of antidepressant, I just acquiesced to the fluoxetine. Again: telling people that antidepressants don’t work HAS CONSEQUENCES.

The doctor, of course, wins a gold medal in “wut” medicine for translating my “I’m not sure fluoxetine did anything” response into “let’s just throw more fluoxetine at the problem.” (In a shocking twist of events, fluoxetine did absolutely nothing. Who could have predicted that result, huh?)

Some good things did happen that summer. I found a great new therapist. I started a fairly effective migraine treatment. The lack of school-related stress from school also helped. I certainly wasn’t as depressed at the end of the summer as I was at the beginning.

Eventually, I saw another doctor. I brought up the fact that fluoxetine (still) wasn’t doing anything. She decided not to switch my medication since I was about to move back to Montreal.

“We don’t want too many changes at once.”

pride and prejudice, introduction

Fuck you, antidepressants!

I was pretty much on the “FUCK ALL ANTIDEPRESSANTS FOREVER” train by this point.

Passion, or Wellbutrin Part 1

I returned to school, still on fluoxetine. Though the fluoxetine remained useless, my depression was under control.

It was a good semester. I found a low-cost therapist. I started dating the Feminist Philosopher. I worked on my honors thesis, I enjoyed my classes, I wrote some popular blog posts.

But even in those good moments, part of me was still stuck in Numbington. And I was sick of it.

The next time I went to Wisconsin, I made an appointment with a new doctor. This was the third primary care doctor I’d seen in less than a year, and I was not optimistic.

But this time, I did my research. I wrote a list of concerns. I found a website with lots of information about antidepressants (Crazy Meds), and I read the relevant information. I knew enough that I could advocate for myself.

And this time, the doctor actually listened to me. Our appointment was supposed to be fifteen minutes long, but she spent an hour with me. We went through my list of concerns, discussing the various things that could be contributing to my mood, making a plan. She asked my opinion on various medications.

I walk out with a list of concrete suggestions and a prescription for Wellbutrin.

***
Wellbutrin, otherwise known as Bupropion, is not an SSRI. And it’s not… entirely clear how it works (you may have noticed a trend here).  Our best guess is that it inhibits the reuptake of dopamine and norepinephrine, two neurotransmitters that, like serotonin, work as mood regulators. Since I hadn’t responded well to an SSRI (fluoxetine), my doctor bet that targeting dopamine and norepinephrine would work better than moving on to another SSRI.

Ignore the last one; I couldn’t get rid of it.

Wellbutrin works quite well with depression. It also has very few of antidepressants most infamous side effects: it doesn’t (usually) cause sexual dysfunction, weight gain or somnolence (feeling tired all the time). It occasionally leads to weight loss – which some people may feel is a plus, but which could be a problem for others.

Crucially, Wellbutrin works particularly well with people whose depression is coupled with social anxiety (*raises hand*) and people whose depression manifests through anhedonia – an inability to take pleasure from activities you usually enjoy (*raises hand*).

Wellbutrin, in other words, was an ideal antidepressant for me. It wasn’t an SSRI, it had few side effects, and it tended to work well for people whose depressions were similar to mine.

I felt so much better when I walked out of the doctor’s office, in large part because I wasn’t just taking a pill on faith. The doctor had explained her reasoning, and I felt that she was addressing my specific needs, rather than giving me a one-size-fits-all medication.

Thus, armed with a new antidepressant and a whole lot of hope, I returned to Montreal’s cold embrace.

***
Reader, Wellbutrin worked.

pride and prejudice, gif, Elizabeth Bennet, Mr. Darcy

Two and a half weeks after I’d started the pills, I woke up at nine, lounged in bed for less than five minutes, got up and started making breakfast.

Wait. Pause. If there was something I’d never been able to do during my depressions, it was actually waking up. What the hell was going on?

It kept going. I started getting out of bed with energy in the morning. I was motivated to do things. I was procrastinating less. I’d finally started outlining my honors thesis. My appetite was back. My insomnia was gone. I planned for meals and sleep. And my anxiety, the electric beast perching on the back of my head day and night, seemed to have gone to sleep. I only felt occasional prickles.

Then, reader, I had to have a bit of a sit-down. Because if a medication could make my depression better so quickly and so radically, then maybe I wasn’t the problem.

Maybe I actually did have fucked-up brain chemistry.

Elizabeth bennett, gif

You think I would have figured this out earlier. But even though I believed that depression was a disease, not a personal failure, and even though I knew the mechanics of depression, and even though I knew I couldn’t just “snap out of it – subconsciously? I was pretty sure it was my fault. I bought into the “depression as personal failure” model.

Wellbutrin knocked a couple legs off that theory.

 Part 4: Separation, or Wellbutrin, part 2

A few weeks after Wellbutrin started working, I started fainting. Plus, I had a noxious combination of dizziness, nausea, constant-never-ending hunger and hypoglycemia.

… side effects.

I was in Canada, and I had no way to pop down to my doctor’s office in Wisconsin to figure out if Wellbutrin was indeed causing these symptoms. They weren’t on the list of common side-effects, but there weren’t a lot of competing explanations. At some point, my doctor stopped responding to my emails. I was cut off of medical advice. Any doctor I could have seen in Canada would have cost a whole lot of money, and would have zero knowledge of my medical history.

And meanwhile, I was dizzy/fainting/hungry/nauseated/ freaking out.

I stopped taking Wellbutrin. Cold turkey, no titrating. It seemed like the best option at the time.

Pride and Prejudice, Mirror scene, Elizabeth Darcy

I stopped fainting. The dizziness went away. And the depression, temporarily banished to the outer atmosphere, fell straight back home. With a vengeance.

Going from “doing good!” to “severely depressed” in a week was viciously painfulI spent a lot of the month of February and March curled up in bed, watching Elementary and drawing pictures of naked women (don’t ask).

But I did return to functionality. Depressed functionality, true, but functionality. All of my assignments got turned in on time. I missed minimal classes. I finished my honors thesis with time to spare. I graduated with first class honors. I made some big life decisions; I moved apartments; I dealt with bed bugs. I started playing video games.

Three people are now rolling on the ground, laughing at this Dragon Age joke. Credit: http://falseteethcyborg.deviantart.com/art/Shale-DESTROY-ALL-PIGEONS-198074293

I was depressed, but I was okay.

Part 5: Despair

Then I stopped being okay.

It was summer. I was no longer in school. I was facing a really massive change in my life: the end of college, the beginning of my adult life, a move to a terrifying new city etc. etc. etc.

And I was now entering year two of an untreated depression.

My depressions were usually characterized by numbness, exhaustion and lack of interest in the world. I did have moments of overwhelming sadness, but they were moments. They lasted twenty minutes to an hour at the most.

Now they lasted days. My numbness now translated into constant sadness and despair. I took frequent breaks during the day to lie in bed and cry. I cried myself to sleep most nights.

And then, for the first time in my near-five years of experience with depression, I experienced suicide ideation.

Feeling suicidal is Not Fun. Especially when it’s happening 2-3 times a week, and you’re too terrified by the feeling to tell anyone. I’d always been able to handle my depression. I didn’t know how to handle this. I didn’t know how to handle the overwhelming sadness and shame and guilt that made me want to die. I’d always felt like a burden; now I felt like so much of a burden that I just wanted to disappear, to make everyone’s life easier.

Hyperbole and a half

Yes, I wanted to live; I wanted to live desperately. I had so much to live for. But I also wanted desperately not to feel, to stop the pain of living, to end my constant guilt. In those moments, I felt trapped – I couldn’t see a stopping point to the pain. I didn’t believe there would be a stopping point. I just wanted it to end.

It never got bad enough that I started planning, or even considering options. But the “not bad enough” was more than bad enough for me.

I was so scared.

A friend and I were talking over facebook around this point, and she said, “I don’t understand. You have the Feminist Philosopher. You two seem so happy together. And you’re moving to NYC, and there’ll be lots of opportunities there. Why are you depressed?”

See,  that’s what’s so terrifying about depression. It’s not necessarily a response to something. It can be caused by psychological and environmental factors, but it doesn’t need to be. It’s an illness.

It doesn’t need to be caused by anything.

Which, when you’re lying in bed thinking about death, is horrifying. Because if it isn’t caused by anything, how are you going to make it go away?

Reunification, or Paxil

Paxil!

To cut a long story short: I found a way to get back to Wisconsin (for a ridiculous amount of money). I saw my doctor and left her office with a prescription for a new antidepressant: Paxil, AKA Paroxetine

Even today, I have zero idea why I was prescribed Paxil. It’s one of the more prescribed antidepressants, but it’s not one of the most effective ones – in a lot of trials, it’s not even as effective as fluoxetine, which we’d established didn’t work for me at all. It’s also one of the worst, if not the worst, antidepressant for side effects – especially for sexual side effects.

I… was not happy about that. I really like sex. Sex was one of the things that remained wonderful despite the depression.

And, on top of the horrible side effects, Paxil has a notorious discontinuation syndrome. If Paxil didn’t work, not only would I have to find a new antidepressant, I might also have to deal with withdrawal.

At the same time… Wellbutrin was supposed to work great and cause zero side effects. But it didn’t. So maybe I wouldn’t know how Paxil would work for me until I tried it.

So I tried it! Very unhappily, but I did!

tumblr_li9vljpWlo1qcrza7o1_500

I really wasn’t expecting much.

But taking Paxil, my friends, was a good life choice, because two-and-a-half weeks later, the fog just – lifted.

I know this whole “fog-lifting” thing sounds like a figure of speech, but it did not feel that way at the time. It was as though every color in my brain had reset to a brighter setting. Two weeks.

Pride and Prejudice, Mr. Darcy, sunrise scene

Antidepressants rising

I stopped feeling suicidal. I haven’t had a single episode of suicide ideation since I started taking Paxil. All my random crying jags ended. I mean, I still cry, but there’s always a reason – I’ve had a bad day, I’ve dropped a stack of books on my foot, I’m watching Catching Fire and I can’t handle the flashbacks to RUUUUUEEEE.

My moods made sense. I wasn’t randomly desperate or unhappy or mad. If I was sad, it was because something sad had happened. And my default was no longer “numb/sad,” it was “fairly happy.”

Yeah, when antidepressants work, they can really work.

A few weeks later, I moved to a new city – New York City, in fact. Unlike my first major move (to Montreal), this one did not provoke a new depression. In fact, I was pretty thrilled. I found a great job. I found a second job as a freelance book reviewer (!!!). I made friends. I explored the city. I spent lots of time with my boyfriend.

When people say that antidepressants squash creativity, I laugh and laugh. Sometimes I can stop laughing before they start talking about calming drinks.

Prior to Paxil, I was basically incapable of reading, much less writing. When I got to New York, I started writing again. I managed to publish a few blog posts – those had essentially disappeared during the Major Depressive Summer. I began writing fiction again for the first time in years. I taught myself how to spin yarn using a drop spindle. I started painting my nails. I took the GREs, I applied to graduate school, I got a 750 on the GRE in Literature. The three people who have taken that test are now suitably impressed.

I started volunteering.

tumblr_mayaoxQWRA1rrghlso1_500

Dear Paxil:

… yeah, I’m pretty sure the antidepressants aren’t destroying my personality.

Okay, let’s talk about the bad news – the side effects.

I’ve got a couple. The usual vivid dreams – serotonin is notorious for this one – but vivid dreams don’t really bother me. I’m sleepier, although I can’t tell whether this comes from the paxil, or from all the migraines I’ve been getting. I now shake my leg when I’m working at my desk – again, I can’t tell if this is a side effect from paxil, or if I’ve just picked it up in the last few months.

I haven’t had any sexual side effects, which is BLOODY FANTASTIC. My sex life is great, thanks for asking!

I have gained a lot of weight. Side-effect fatty over here! Obviously, it is possible that this is an unrelated weight-gain, but the evidence seems to indicate that it stems from the Paxil. I’ve also been eating less and exercising more since I started Paxil (it’s amazing how not being depressed can help you get out of the house/cook food). And I gained weight on my other SSRI, fluoxetine, which I lost it when I stopped taking the drug.

I think I’ve gone up a couple dress sizes. Am I super-happy about this? Nope!

I am a product of our society, and although intellectually, I don’t think there’s anything wrong with being fat(ter), I struggle with a shit-ton of body issues. Plus, you know, having to buy new clothes sucks.

At the same time, I’d rather be bigger and happier than thinner and depressed. At least when I’m in recovery, I have the emotional resources to deal with body-image issues. When I’m depressed and thinner, I still hate my body, but I have no capacity to deal with it.

So. On balance, I’m quite pleased with Paxil. It took three medications, but I’ve finally found one that puts me in recovery, and where the side effect are tolerable.

Part 7: The end of the courtship

Having been through the whole courtship and marriage plot shindig, let me tell you, I’ve learned a lot about antidepressants. I know how to make a relationship with serotonin and other neurotransmitters work.

Let me share my secrets.

1. If you don’t feel antidepressants working, they’re not working

I wasted an incredible amount of time taking fluoxetine because I thought it might be working even though I didn’t feel any different. Now I know better: if you don’t feel an antidepressant working within six weeks, it’s not doing anything.

You definitely want to give it six weeks (although many doctors will want you to check in after three weeks to see if they should up the dose) because some antidepressants take time to work. But if you’re not feeling anything, or if what you’re feeling is so subtle that it’s meaningless, you have the right to bring it up. There’s nothing wrong with you because a treatment didn’t work. And you are not obliged to keep quiet about it to make the doctors feel better or to avoid inconveniencing anyone.

Moreover, just because one dosage of one antidepressant doesn’t work does not mean that antidepressants are wrong for you, full stop. After using fluoxetine, I was pretty sure antidepressants did nothing for me. Five years later, I can say with certainty that some antidepressants do a whole lot for me.

Is it a pain in the ass to deal with the trial-and-error of finding the right medication? Absolutely. Just like it’s a pain in the ass to do the trial-and-error of finding a new therapist.

But one experience with antidepressants does not seal your fate with psychiatric medications.

2. Doing your own research is a good idea.

Understanding how antidepressants work and having my own internal database of medications, their side effects and their efficacity went a long way to reconciling me to the idea of psychiatric medications after my bad experience with fluoxetine.

Obviously, it’s important to remember that what you find in your research doesn’t determine how you’ll react to any given antidepressant. See: my experience with Paxil. But it can help demystify the process and allow you to advocate for yourself in the doctor’s office.

You can also get an idea of what side effects are unacceptable to you. Heightened anxiety? Cognitive problems? Somnolence? Loss of libido? If you give doctors an idea of what you don’t want, they can try to tailor their prescription.

At the very least, if you’ve done your research, when your doctor says something you know is false, you can run. 

(I’m personally a big fan of the irreverent and comprehensive website Crazymeds. It’s got a ridiculous amount of information on various psychiatric medications (not just antidepressants). It’s also run by crazy people, for crazy people, which I find reassuring))

3. Advocating for yourself is important, but is also paradoxically the hardest thing to do while depressed.

Finding the right antidepressant involved a whole of lot of me standing up for myself, demanding that doctors help me and refusing to believe that it was all my fault.

In other words, it took a lot of investing in myself.

But there’s a reason it took me five years to get to that point. Because when you’re depressed, you have nothing to invest in yourself. Your resources are gone.

And depression, meanwhile, is actively convincing you that there’s no problem at all… except you. You’re the problem. You’re not sick, you’re just lazy/stupid/etc.

Which is why:

4. Getting good treatment involves supportive, continuous healthcare.

 You know when I started getting good treatment? When my doctor started listening to me. That’s how I got prescribed Wellbutrin. That’s how I got prescribed Paxil. Before then, I’d been through two separate doctors who either hadn’t listened to my problems, or hadn’t inquired further about my experience with antidepressants when I said they weren’t doing much. That… was not okay.

Mental illnesses are a chronic problem, and they need continuous care. A prescription is not the end. Often, problems will arise, the dosage will need to be adjusted, side effects will appear, or the medication won’t work at all. Healthcare here needs to be seen as a long-term process, both by the patients, and by the doctors. My biggest problem with recovery has been my lack of continuous healthcare. Even when I found medications that worked for me, I couldn’t go see my doctor for a regular check-in, because I was in Canada and she… wasn’t. I probably would have found the right antidepressant a whole lot faster if I were able to access healthcare more often.

But unfortunately, access to healthcare was geographically and economically impossible for much of my college life. (It’s still economically impossible for me at this point, which… is great! (not))

5. Who gives a shit if Antidepressants Are the Easy Way Out?

So, are antidepressants the easy way out?

Time for a rant: The idea that antidepressants are an “easy solution” to depression is such bullshit. The flip side of that coin – that therapy, exercise, diet change etc. and tackling the “root psychological problem” – are the “correct” way to solve depression is also pure BS.

Both these ideas are rooted in the narrative that depression is a personal failure, a mistake you can “correct.” Some people choose the “easy” way out and just take pills, which means they never “correct” their personal failures. Others pull themselves up by their own bootstraps by doing therapy and running 30 miles a day. Those people are actually “correcting” their personal failure by doing the hard work of personal redemption.

Yo, depression isn’t a tragic flaw in a shakespearian tragedy. It’s a disease that fundamentally changes the way your brain works. You do not “deserve” to be depressed. You aren’t depressed because you took the wrong path in childhood. You aren’t depressed because you’re lazy. You aren’t depressed because you’re weak. You’re depressed because you have an illness.

And since depression is an illness, not a character flaw, it responds to treatments like an illness. Which means that everyone’s depression will respond differently to therapies and treatments. No treatment is inherently better or worse than another. If therapy helps you, that’s great. If antidepressants help you, that’s great. If a combination of the two is an optimal solution, that’s fantastic.

Important side note: since depression is an illness that no one really understands, you won’t know what works for your depression until you’ve found it. There’s no great way to guess what’ll work for someone, which is why we shouldn’t assume that one treatment is better than another for any particular person (unless, obviously, there are allergies/side effect issues/other health factors).

Finally:  Who the fuck cares about whether something is “easy” or not when you’re severely depressed? Seriously, this is life we’re dealing with, not an endurance contest. There is no prize at the end for the person who Worked The Hardest To Solve Their Brain Chemistry Problems.

***

Disclaimer: This was my long, long, long post about my personal experience with antidepressants. As a reminder, it’s… my experience, not anyone else’s. And there are a shit-ton of problems with antidepressants beyond the fake issues people invent. Hey, it’s harder for people of color to get correctly diagnosed! Doctors make all kinds of terrible mistakes based on stigma! We don’t have the healthcare structure necessary to make sure that people who need treatment *get* continuous treatment!

Tons of problems.
Antidepressants being “easy” isn’t one of them.


The “Family Members, Friends, Neighbors” approach to Mental Illness: Analysis of 2013’s National Conference on Mental Health

“We all know somebody — a family member, a friend, a neighbor — who has struggled or will struggle with mental health issues at some point in their lives.” – President Obama, June 3rd, National Conference On Mental Health.

It will not shock you to learn that I really, really care about mental illness. After all, approximately half of all the blog posts I’ve written since fall 2012 have been about mental illness. It’s an issue of some interest to me!

And in most of those posts I’ve talked about how stigma and stereotypes about mental illness need to end, how the issue deserves more (intelligent and nuanced) national attention, how we need to create more access to mental health services, and, perhaps most importantly, how we need to change the way society respond to mental health issues.

A few days ago – on Monday, June 3rd – President Obama convened a National Conference On Mental Health at the White House. The Conference was ostensibly called in response to the Newtown shootings, although Newtown was never referenced by name. It brought together advocates, elected officials, medical professionals and others (including Hollywood actors) together to discuss the state of mental illness in the United States today. Both the President and the Vice President gave speeches, as did Kathleen Sebelius, the Secretary for Health and Human Services. The conference included a panel on reducing stigma associated with mental illness. Two prominent Hollywood actors – Bradley Cooper, who played a man with bipolar disorder in Silver Linings Playbook and Glenn Close, who has family members with mental illnesses – also spoke.

The conference did almost everything I could want. There was a panel about reducing stigma. President Obama specifically said that mental illness doesn’t lead to violence (!!!). Everyone – including the President – pointed out that one in five Americans will suffer from a mental illness, and less than 40% of them will ever receive treatment.

You would think I’d be pleased.

And I was!

… okay, I was only kind of pleased. In fact, as I read coverage of the conference, I found myself getting increasingly frustrated. Because, for all that the conference was supposed to be about mental illnesses, it turned out to focus far more on *sane* family members and friends of the mentally ill, rather than on people with mental illnesses themselves.

This tendency was  exemplified in the President’s speech, when he stated:  “We all know somebody — a family member, a friend, a neighbor — who has struggled or will struggle with mental health issues at some point in their lives.”

Note the construction of the sentence: “We all know somebody – a family member, a friend, a neighbor – who has struggled with mental illness.” The person with mental illness here is always someone else. They are always removed from ourselves. They are the people we help, the people we are sad for, the people we want to save. The people who are sick, the people who are hurting, the people with the problems – they are categorically not us. They are other.

They are, moreover, specifically not the implied audience of the sentence. The implied audience is the people who “know somebody’ with a mental illness. Obama probably wanted to evoke sympathy for people with mental illnesses. But in doing so, he reinforced the trope of the mentally ill as the “other” – as people who aren’t worth speaking to, and about, directly. Despite the fact that one in five Americans suffer, or will suffer, from a mental illness, and thus make up a fairly sizeable portion of the audience.

***

Thing is, I do actually know a family member, a friend AND a neighbor who has struggled with mental health issues. You know who else has struggled with mental health issues?

Me.

It’s frustrating, as someone with mental illnesses, to feel like conversations about mental illness include everyone except people with the illnesses themselves. It’s incredibly frustration to hear public speakers talk directly to everyone except me – even when they’re talking about something that directly affects my life. And yeah, it’s pretty damn annoying to feel like my “friends, family and neighbors” are more important to this conversation on mental illness than I am.

The otherizing component of the President’s sentence is not a difficult problem to fix. Example: “We all know somebody — a family member, a friend, a neighbor — who has struggled or will struggle with mental health issues at some point in their lives. Indeed, many of us suffer, or will suffer, from mental illnesses.” See the change? It’s a small one – from “them” to “us “- but a crucial one. Suddenly, people with mental illnesses aren’t just other people to be taken care of by their friends and family – they are us. They are a part of the discussion.

And you cannot have a constructive conversation about mental illness without centering the voices, needs and experiences of people with mental illnesses themselves. Not people who KNOW people with mental illnesses. People with mental illnesses. The people, in other words, who are most affected by the problem.

***

There were a few moments in the President’s speech where he spoke directly to, or about, people with mental illnesses. But they were overwhelmed by addresses to, and anecdotes about, “friends and family members.”

President Obama’s construction of mental illness in his speech was, unfortunately, emblematic of a wider problem at the conference: it seemed much more aimed at those fictional “family members, friends and neighbors” than it was towards actual people with mental illnesses.

None of the actors, elected officials or advocates invited to speak identified as mentally ill. Only one woman on a six-person panel on reducing stigma actually had a mental illness – and thus some first-hand experience. Why are people with mental illnesses so badly represented at, of all places, a National Conference on Mental Health? For fuck’s sake, somewhere around 20% of the country has, or has had, a mental illness. It can’t be that hard to find speakers and experts from that population.

Contributing to the problem, speakers continually praised the efforts – or the struggle – of the “family members and friends” of people with mental illness, while simultaneously failing to mention the struggle and efforts of people with mental illnesses themselves. Vice President Biden, for example, talked about a friend whose son had a mental illness. President Obama talked about former Republican senator, Gordon Smith, and how his son’s suicide led him to start a campaign designed to change attitudes about mental illness. There were very few mentions of the struggles of people with mental illness, or the work or advocacy they were doing (be that work “getting out of bed in the morning” or “starting an organization”).

I don’t think that friends and family members of people with mental illnesses don’t struggle, or that their struggle isn’t important. I don’t think that friends and family members of people with mental illnesses don’t do great things to help, or that those things aren’t important to talk about. What I object to is centering their experience and their work at the expense of the experience and work of people with mental illnesses.

In one of the more frustrating moments, Biden mentioned that his friend felt like he was holding a string to his son, and if he tugged too hard, the string would break and he would lose his son forever. Biden ended by saying: “That is how a hell of a lot of people feel.”

I’m sure they do… but a hell of a lot of people feel like they’re the ones on the end of that string about the break. A hell of a lot of people feel like they’re about to lose themselves forever. Why aren’t we talking about them? Why aren’t we centering their experiences? Especially at a Conference supposedly addressing their issues? Why would you choose to center the stories of people who have a secondhand experience with mental illness, rather than the stories of people who have a firsthand experience with mental illness?

Because the Conference wasn’t really about, or for, people with mental illnesses.

***

Once I realized that the conference wasn’t about people with mental illnesses, many things were suddenly clear. . Like the presence of Bradley Cooper and Glenn Close. When I saw they were on the guest list, I was all: “WHAT THE FUCK ARE BRADLEY COOPER AND GLENN CLOSE DOING THERE?” But now I understand! It’s because they know people with mental illnesses!

And that’s the important thing to highlight!

No disrespect to Bradley Cooper and Glenn Close. I like Bradley Cooper and Glenn Close! They seem cool. But like everyone else at the conference, their experiences of mental illness are second-hand. Glenn Close has two family members with mental illness.And Bradley Cooper played a mentally ill character in a film. How’s that for a tenuous connection?

(since I’ve played not one, but two characters locked in insane asylums, I am eagerly anticipating an invitation to deliver the keynote speech at the National Conference for Reforming Our Psych Wards. I am QUALIFIED.)
(I am not qualified. Do not invite me.)

As Bradley Cooper himself put it: “I’m sort of here by accident. It’s not that I didn’t know about mental illness. I think it’s just that I just didn’t see it as a part of my life.”

Couldn’t the White House have chosen to invite someone for whom mental illness IS an inextricable part of their lives? Did no one even consider inviting a Famous Person ™ with an actual mental illness? They are out there! They exist! What about Rachel Maddow, who has discussed her problems with depression?  Or Demi Lovato, who often talks publicly about her eating disorder, addictions and bipolar disorder?

Why would you invite Bradley Cooper, who PLAYED a man with bipolar disorder, when you could invite Demi Lovato, who actually HAS the illness? Or Catherine Zeta Jones? Or Carrie Fisher? Or Emilie Autumn? Or Francis Ford Coppola? I’m not kidding when I say there are lots and lots of celebrities with mental illnesses that the White House could have chosen to invite. How about Emma Thompson, Stephen Fry, Brooke Shields, Hugh Laurie, Halle Berry or Janet Jackson?

I understand that the point of inviting Bradley Cooper and Glenn Close is to enlist star power to the Conference’s cause. But how much more effective would that star power have been if the stars had actually struggled with mental illness? And could speak from a place of personal experience?

The narrative would shift from  “this horrible thing happens to some people and we should help them” to “this horrible thing happens to me.” And that’s a crucial shift, because it forces people – the media, politicians etc. – to stop treating the mentally ill as “other” and start treating them as “us.” It is much harder to objectify, otherize and stereotype people with mental illnesses when they are the featured speakers at your conference.

(As an aside: I would argue that the comic-blog-thing Hyperbole and a Half published a month ago was more influential culturally than the entire conference, precisely BECAUSE it focused on Allie’s personal experience with mental illness. I’ve shown that post to SO MANY PEOPLE and been like “this is exactly how I experience depression” and seen a mental lightbulb go off.)

Moreover, if we assume that the Conference was supposed to help people with mental illnesses (a fairly naive assumption at this point, but bear with me), inviting stars who actually have mental illnesses would have been far more effective than inviting Cooper and Close. Seeing successful, respected people who suffer from similar diseases is inspiring – it shows that mental illnesses are an illness, not a destiny. When I read about, say, Rachel Maddow’s struggle with depression, I feel hopeful. She’s a woman I admire a great deal, and hearing her talk about her illness makes me feel, in the most visceral way possible, that my depression isn’t a sign of weakness or of incapability.

Inviting Cooper and Close sends the message that mentally ill people can be the friends and family of great people. Inviting Maddow, Lovato, Autumn, sends the message that mentally ill people can be great people themselves. Which sounds like a more effective message?

***

Okay, so, it’s frustrating that the President and the Conference won’t speak directly to people with mental illnesses. It’s annoying that they’re incapable of inviting speakers who actually have mental illnesses, rather than people who have friends and family with mental illnesses? But is it anything more than annoying?

Yep! There are some pretty grim consequences to the trope of highlighting  “friends and family” of the mentally ill at the expense of  actual people with mental illness. I mean, aside from otherization and erasure (HAHAHAHAHAHAHAHAHAHA, like those aren’t grim consequences in and of themselves, oh, I do make myself laugh).

Ahem.

First, it adds to an already-potent cultural myth that people with mental illnesses are so addled and deranged that they can’t possible voice their own experiences, or participate in discussions about their own illnesses.By choosing to highlight the “friends and family” (and actor-portrayers) of the mentally ill rather than the mentally ill themselves, the conference reinforced the idea that people with mental illnesses are incapable of advocating for themselves. They are incapable of speaking for themselves. They are incapable of solving their own problems, or of being responsible for wider social change. They are problems to be solved (by sane people), not problem-solvers.

There’s a long history of giving families and governments the power to control the lives of people with mental illnesses, because we assume that people with mental illnesses are irrational and incapable of making intelligent decisions. Reinforcing that trope is dangerous as fuck.

Second, the “friends and family” approach makes it seem like people with mental illnesses are only important in the context of their relationships. In the President’s speech, we are defined not as individuals, but within the structure of relationships with “sane” people – the “family member, friend, neighbor” who knows us. This makes us secondary players in our own illnesses: our conditions are important not because they’re destroying our lives, or making every day a struggle, but because they’re making our loved ones miserable.

If you’re going to try to improve the state of mental illness in the USA, please, don’t do it because you want to spare my parents, my family, my friends, my neighbors. Do it because you care about how it affects people with mental illnesses. 

I have a family. I have friends. I have neighbors. I have loved ones. But that’s not why I deserve to be treated as a human being. That’s not why you should reduce the stigma around mental illnesses, or increase mental health access, or change societal attitudes.

That’s not why people with mental illnesses deserve help.

Not to mention the fact that some people with mental illnesses DON’T have family or friends. I’m serious. Some of them are kids in foster systems. Some of them are kids with abusive parents – they have family, but their family is the source of their mental illness, not their support system. Some people with mental illnesses don’t have friends. Some have lost their family. Some are far away from the people they love. They are still valuable people. And they are worth our time and attention, regardless.

***

There was a lot of good stuff in the conference. People pointed out that mental illnesses aren’t inherently linked to violence! There was an entire panel about reducing stigma! There was talk of improving access!

Unfortunately, the conference’s potential was marred by its lack of focus on people with mental illnesses. In a conference where people  pointed out that one in five Americans will suffer a mental illness in their lifetimes, there were shockingly few people with mental illnesses, either as speakers, as the implied audience, or as the focus of speeches and discussions. Instead, most of the focus was on “sane” friends and family members of people with mental illnesses – their experiences, their advocacy, and what they could do to help.

And it’s not like President Obama and the other organizers don’t understand the value of personal experience. In my favorite moment of the President’s speech, he talked about Patrick Kennedy: “when he was running for reelection back in 2006, he could have avoided talking about his struggles with bi‑polar disorder and addiction. Let’s face it, he’s a Kennedy. His seat was pretty safe. Everybody loved him. And yet, Patrick used his experiences as a way to connect and to lift up these issues, not hide from them. One day a woman came up to Patrick at a senior center and told him she was afraid to tell her friends she was taking medication for a mental illness because she was worried they might treat her differently. She told Patrick, “You’re the only one who knows aside from my son.”

From this anecdote, it’s clear to me that Obama understands (some) people with mental illnesses have agency, and that having people in prominent positions talk about their personal experiences with mental illness can make a tremendous change.

I just wish that anecdote had set the tone for the conference, rather than the “we all know someone with a mental illness” sentence. If it had, this conference could have been tremendously influential. Imagine a giant panel of superstars like Rachel Maddow, Janet Jackson, Demi Lovato etc. talking about their experiences, their successes, their struggles, and what they think is necessary to change the state of mental illness in the USA. And then a panel of non-superstars – just regular people with mental illnesses – doing the same. Now THAT would have been a conference.

It’s not that hard to change the focus. You just have to stop seeing people with mental illnesses as the “other,” and start seeing them as part of the “us.”


On Not Being Adam Lanza: Why Dialogue on Mental Health Must Include People with Mental Illness

[Content note for violence, violence against children, disablism]

Last week was not a good time for my happy levels. First, we had the Good Man Project (or,as I like to call it, the No Rapist Left Behind Project) debacle. Then a close friend of mine died unexpectedly. And on Friday, a gunman walked into Sandy Hooks Elementary School and killed twenty kids and seven adults.

I do not want to be writing this post.

Twenty eight people are dead. Twenty kid are dead, kids who are just a bit younger than my younger brother. I do not want to write about mental illness. It feels… wrong to use this as an excuse to talk about the rights of the mentally ill.

I was not planning on writing this post.

But then it started again. People diagnosing Adam Lanza over the internet, assuming he was mentally ill. An acquaintance saying “Evil is a mental illness.” Everyone, from politicians to newscasters to friends, talking about how we have a “mental health access” problem. There are very few spaces on the internet I can go where people aren’t talking about how we have a “mental illness problem” and how Adam Lanza was surely “mentally ill” and if we just had better access to mental health care this wouldn’t happen etc. Even my usually progressive and social-justice aware friends are falling into the pattern.

Now the Sandy Hooks massacre has everything to do with mental illness.

And now, even though I do not want to write this post, I need to write it.

I need to write it even though I know hundreds of other people will say the same things.

I need to write it especially because hundreds of smart bloggers and social justice crusaders and mental health advocates will say the same things. Because our voices are being out-shouted a thousand to one. We need to be heard if we’re even going to be allowed to participate in this farce of a conversation.

The Sandy Hooks massacre was not caused by mental illness. The mentally ill are not some mob of soon-to-be-violent, ticking time bombs. But damn it, if people are going to sit around and stigmatize the mentally ill as an excuse to avoid looking tragedy in the face? Then hell yeah, I’m going to talk about mental illness.

***

This is not a fun conversation for me to have. Those who follow the blog – or those who know me from Real Life – know I identify as mentally ill. I have a severe anxiety disorder and a major depressive disorder. Dealing with mental illness has defined my life for the past four or five years.

You’d think I’d be happy people are talking about mental illness. I, of all people, know how problematic it is for mental illness to be pushed under the rug, to be ignored and stigmatized.

Sadly, the conversation around Sandy Hooks embodies everything that is wrong with how we talk about mental illness:

1. Violence MUST be the product of Mental Illness.

Here’s the thing. As of this point, we don’t even know if Adam Lanza had a mental illness or disability of any kind. But strangely enough, we’re all talking about mental illness issues. It’s like we magically know Adam Lanza’s mental state.

But wait! We do! Because only mentally ill people would kill so many people. Ergo, Adam Lanza must be mentally ill.

*headdesk*

Acting like violence is the product of mental illness – and ONLY the product of mental illness – is incredibly problematic. And saying that mental health access will solve gun violence is also incredible problematic. Both imply that mentally ill people are violent, dangerous and uncontrollable.

I’m sure some people are going “but they’re not talking about garden-variety depressives like you! They’re talking about the DANGEROUSLY mentally ill.”

Okay, first: *headdesk* again

Second: Yes, in fact, they’re talking about all of us mentally ill folk. The Rachel Maddow Show, for example, had a segment about how to prevent future shootings. The expert’s main recommendation? Adolescents should have a yearly screening for depression.

I’m sorry, how am I not supposed to interpret that as making a causal connection between depression and violence? Did the expert temporarily forget what he was talking about? Was he about to say “gun control laws” but then got his notes mixed up and started talking depression instead?

Nope. What he was saying was that if we do a better job catching depressives, we’ll have fewer school shootings.

Which implies that depression leads to violence.

[everyone better keep the butter knives away from me, I’M JUST SAYING]

The more people talk about how mental illnesses are linked to this type of violence, the more we assume mental illness means violence. And the more and more mental illness becomes stigmatized.

Ironically, stigmatizing mental illness tends to limit access to mental health care, not expand it. How many people do you honestly think are going to say “whoa, I’ve got a mental disability, I’d better get that checked out” after hearing about how mentally ill people are dangerous child killers? Not a whole lot. More people will avoid getting a diagnosis, aware that their condition could get them labeled as dangerous and violent.

Here’s the crucial thing, the thing people are ignoring completely: Violence isn’t linked to mental illness. This is a provable fact. Mentally ill populations – including populations with mental illnesses that we traditionally associate with violence (like schizophrenia) – are no more violent than everyone else.

Most mentally ill people are not violent. Most violent acts are committed by people who do not have mental illnesses. So the whole “Whoa, someone did something terrible! They must be CRAZY”?
Provably wrong.

To add insult to injury, people with mental illnesses are more likely than the rest of the population to be victims of violence. 3% of the general population experience violent crimes, while TWENTY FIVE percent of those with mental illnesses do.

Welcome to the upside-down world of public discourse on mental illnesses. In real life, most mentally ill people aren’t violent, and in fact are more likely to experience violence than the general population. In public discourse, however, mental illness is responsible for all the Terrible Violence, and no one is ever interested in talking about how people with mental illnesses are victimized and abused by violent crime [we’ll come back to that point later]

2. Dehumanization of People with Mental Illnesses

In this national “conversation” about mental illness, you’ll notice something interesting: no one seems terribly interested in talking with mentally ill people.

The mentally ill are people we talk about, not people we talk to. We aren’t interested in having a conversation with them, despite the fact that they’re the ones most affected by the issue. We love telling horror stories about what happens to mentally ill people who don’t have access to mental health services, but we never ask people with mental illnesses what they think of the issue.

Could you imagine having a conversation about, say, women’s reproductive rights, and not inviting women speakers?

[… oh, wait, this is the United States I’m talking about. OF COURSE I could imagine a conversation about women’s reproductive rights with absolutely no women involved. In fact, I’ve seen it happen! Bad example.]

By excluding people with mental illnesses from the conversation, and privileging the voices of those who see mental illness as something terrifying, we are dehumanizing people with mental illnesses. They are not even worth trying to understand. They’re just a problem to be solved, a fear to be controlled.

The most problematic entry in this category is the now-viral post “I am Adam Lanza’s Mother.” In the article, the writer discusses her fears that her mentally ill son could turn into an Adam Lanza, due to lack of access to adequate mental health care. .

[Initially, I linked to the original article, but since one of my critiques of “I am Adam Lanza’s Mother” is that it violates her son’s privacy, I decided that linking it would contribute to the problem.  But if you want to read it, google!]

I want to be clear that I have a lot of sympathy for the author. I cannot imagine how difficult it must be to protect and care for her children, especially given how much stigma there is around mental illness, and how little support there is for children with mental illnesses. I am not disputing the legitimacy of her grievance, or of her pain. And I, like her, desperately want us to find better solutions for children with mental illnesses.

The article, however, is incredibly problematic. Not just because it appropriates a national tragedy. Not just because it appropriates Nancy Lanza’s experiences, or tries to express a solidarity with her that may not have existed.

But because it appropriates the son’s experiences.

There is a reason this went viral. And the fact that it was written by a “sane” person talking about a mentally ill person, rather than a person with mental illnesses talking about their own experiences? A big part of that reason.

The author – and the commenters – do not acknowledge that the son has his own experiences and ideas. They seem to have no interest in having a discussion with him, or with people like him. Instead, the son is portrayed solely as a problem, a terrifying child that no one can understand, an evil, calculating, rage-filled monster.

Would a post by a person with a mental illness speaking about their own experiences have the same impact?

Probably not.

This would not bother me nearly as much if this wasn’t usually the way it worked in conversations about mental health. When the broader community wants to “learn” about mental health issues, they do not go to people with mental illnesses. They go to their “sane” relatives, or their “sane” allies. In support groups for mental illnesses, for example, the voices of parents are far more privileged than are the voices of their mentally ill children.

I don’t think the perspective of family members or friends of people with mental illnesses are unimportant. But the reality is, those voices usually erase the voices of those with actual mental illnesses. The conversation is dominated by people who are “impacted” by mental illnesses because someone they know suffers from them, or because they have some sort of objective expertise. Meanwhile, those most impacted are shut out of the discussion entirely.

I cannot speak to the experiences of the author’s son. My various disorders are certainly nowhere near what he seems to be manifesting. But I know the frustration of people talking about your problems as if you weren’t in the room. It isn’t just that people don’t acknowledge that the mentally ill should be included in these conversations. It’s that they seem to forget we have a perspective at all.

Which is all kinds of ironic. If people were serious about addressing mental health issues, they would want to talk with people who suffer from mental illnesses. Those are valuable and important perspectives. In fact, they’re the most important and most valid perspectives.

Unfortunately, we’re just problems to be solved.

This, of course, adds to our sense that people with mental illnesses are unable to speak or advocate for themselves. That they have nothing valuable to contribute. That they’re so addled and deranged that they can’t possibly voice their own experiences.

I’m also deeply uncomfortable with the idea that the families or parents of people with mental illnesses are the best advocates for mental health issues.

Often, families will have agendas that are quite problematic, or that are at total odds with what people with mental illnesses actually want. And since the families/parents are the “sane” voices, their experiences are privileged. Moreover, our assumption that parents are best suited to advocate for their kids in these types of situations is based on the premise that parents always act in the best interest of their child. That, sadly, is not always true.

On The Rachel Maddow Show, the expert mentioned that although depressed kids want help, they almost never go to their parents. What he didn’t talk about is the reality that some of those kids won’t talk to their parents because it would not be safe for them to go to their parents. I’ve known people whose parents teased them for their mental illnesses, or who ignored their mental health problems, or who pressured them to go off medication before they were ready, or who denied them access to mental health care, or who told them their mental illnesses were just “character flaws” and they needed to “get over it.”

And unfortunately, sometimes, parents may be the reason why a child develops a mental illness (if, for example, the parent is emotionally or physically abusive).

Even when parents and families do have the best of intentions, they can make horrible, damaging mistakes. Unfortunately, the author of “I am Adam Lanza’s Mother” made one of those in writing her article under her real name. Now her child’s entire mental health history is available on the internet for anyone to read. No matter how horrible her child is, he has the right to privacy, and the right for the media and the internet not to know everything about him without his permission.

[I do think Lisa Long’s decision not to use a pseudonym was an honest mistake, since I’m assuming she didn’t anticipate her article would go viral. It is still an incredibly damaging mistake for her son and her other children.]

I’m not saying this because I think the author of “I am Adam Lanza’s Mother” article is a bad parent, or is responsible for her child’s mental health issues, or has anything but her child’s best interests in mind. I’m trying to explain how problematic to privilege the voices of parents or relatives in discussions of mentally ill kids.

You cannot have a constructive conversation about mental health care without including – and, yes, privileging – the voices of people with mental illnesses.

And you’re not going to get people with mental illnesses to join the conversation if you dehumanize them, act like they are the problem, or stigmatize them as violent. Which makes me suspect that this “conversation” is not actually about helping people with mental illnesses, but is about giving people an easy target to scapegoat.

3. Mental illness is only important when we think people with mental illness could be violent.

Somewhere around one fourth of all Americans will suffer from mental illnesses at least once in their lives. Most do not have access to adequate mental health resources. Mental illnesses are stigmatized and framed as “character flaws” rather than legitimate illnesses, which makes it even more difficult for people to access help. People with mental illnesses are more likely to be victims of violence. They struggle with getting proper job accommodations and with social stigma. Their voices are ignored and erased from conversations.

Mental illness, and mental health in this country, is an enormous problem.

Yet strangely enough, the only time when anyone seems interested in addressing this problem is when we’re (incorrectly) blaming the mentally ill for violence.

It reminds me of conversations around school bullying, where people argue that we need to curb bullying because the victims might become “troubled” and “violent” later.
Really? That’s why? That’s the problem with bullying?

And the real problem with mental illness is that people might turn violent? Really? Nothing else problematic about mental illness?

*headdesk*

First, this whole “more mental health access = less gun violence” plan doesn’t compute. Since most mentally ill people aren’t violent, and most violent people aren’t mentally ill, increasing access to mental health care won’t solve our problem with mass violence.

Second: if you want me to have better mental health care access because you’re afraid I might get violent (as opposed to believing that everyone deserves access to mental health care because good mental health is valuable in-and-of-itself ) then you don’t give much of a shit about me. Or about anyone with mental health issues.

Here’s another way of looking at it: there’s a good chance some of the kids at Sandy Hook will develop mental health problems because of their experiences.  Do they deserve mental health care because we want to help them? Or do they need mental health care because they might become “troubled” and “violent”?

Ironically, the people who stigmatize the mentally ill so they can protect the children? May be hurting the very kids they supposedly want to protect.

***

You know who needs mental health care? Everyone. Low-income families. Communities of color. Rural communities. Non-native English speakers. Children. We need to destigmatize mental illness so that it’s seen as a normal thing people go through, not as a character flaw. But that’s not a conversation anyone seems interested in having.

Instead, we want to look at acts of evil and say: that person is not like me. And if he is not like me, he must be mentally ill.
It’s a distancing technique. And it allows us to abdicate real responsibility for what happened.

I got in an argument on facebook with someone who claimed that “evil” is a mental illness. This attitude, sadly, is a trend. When we don’t understand something – or when we don’t WANT to understand something – we label it as crazy. But in a society that glorifies violence, that allows almost anyone access to assault weapons, a society that celebrates toxic masculinity and aggression, is Sandy Hook really that shocking?

To me, it seems like the logical – if horrifying – conclusion of our gun laws and our obsession with violence and aggression.

Instead of taking on the hard job of actually standing up to the NRA and the politicians and the pro-gun lobby, however, we would rather stigmatize an already marginalized community (and one that had nothing to do with the Sandy Hooks tragedy). After all, it’s so much easier to blame everything on mental illness than to come to a consensus that ASSAULT WEAPONS should not be available to anyone with a photo ID.

We live in a society where we can’t even manage to get stricter gun control after twenty kids are killed. But people with mental illnesses are the dangerous ones.

… yeah, no.

***

We desperately need to have a conversation about mental illness. We need to talk about access. We need to talk about how we routinely ignore certain segments of the population (especially the poor, the non-white and the non-american) when it comes to access. We need to change the discussion so that mental illness is seen as a legitimate problem, and not as a character flaw. We need to privilege the voices of people with mental illnesses, and acknowledge that they are the experts on their own experiences.

That, sadly, is not the conversation that is happening right now. Because people aren’t that interested in mental illness. They’re interested in easy (and incorrect) answers. They’re interested in blaming easy targets. And they’re interested in distancing themselves from the tragedy.

Like I said at the top of the post, I do not want to have a conversation about mental illness in the wake of the Sandy Hooks tragedy. But if people are going to stigmatize mental illness as a way to avoid looking at reality in the face?

Then yeah, I’m going to talk about it.

Related Reading:

Kids, Mental Illness and Violence

You Are Not Adam Lanza’s Mother

On Sitting With Fear

Disability and Abuse on Grey’s Anatomy

* Much thanks to my various friends who let me rant – and ranted with me – yesterday.

** Comments section will be moderated with the Iron Fist of the Feminist Batwoman. Priority for comments section is keeping them a safe space for me and for any other people with mental illnesses who may be reading. Personal attacks or arguments in bad faith would violate that safe space. Remember to use “I” words. And don’t police feelings.