Why, since I spend so much of my time talking about emotional well-being, do I inwardly cringe at the approach of things like “Mental Illness Awareness Week” and “World Mental Health Day”? Because I’m mentally preparing myself for the onslaught of societally-approved messages about human suffering, messages ranging from the ill-informed to the downright dangerous. I’m too used to seeing anyone who questions dominant ideas about mental health accused of shaming and stigmatizing others with their crackpot ideas; never mind if those with the questions are part of the groups supposedly being shamed and stigmatized or if the evidence is on their side.
Below is a list of seven important points about emotional distress that I wish everyone understood this World Mental Health Day.
1. No psychiatric diagnosis is a concrete illness or disorder.
I know, this is about the most controversial statement I could start the list off with. But it’s important because, here’s the thing: literally no disorder in psychiatry’s diagnostic and statistical manual has been found to have a clear biological cause. If you start with problems like anxiety and depression at one end, you’ll find a variety of disorders with an incredible amount of overlap. Many people meet the criteria for more than one of these, not because they’re hopelessly messed up in the head, but because these are categories people came up with by observing and arguing, not illnesses that exist in nature on their own. This was initially seen as a huge weakness of the DSM, a sign that it wasn’t working. But because the problem could never be overcome, it just became seen as normal.
Many people who accept that this might be true of anxiety or depression will say, “Yeah, but stuff like bipolar and schizophrenia, those are brain-based mental illnesses.” But there’s no evidence the experiences that fall under these conditions are entirely biological in nature, either. Schizophrenia is used as the seemingly most hardcore example, but some experts are concerned that it’s a bit of a bunk diagnosis in that it refers to a variety of experiences rather than one discrete condition. The next version of the ICD, the diagnostic manual of the World Health Organization, is going to change the current diagnosis of schizophrenia to a “spectrum disorder” in an attempt to represent this messier reality.
2. Questioning the dominant paradigm of mental health doesn’t have to be stigmatizing.
I often see this very black-and-white dichotomy of “You either believe these are biological diseases or you’re an asshole who’s stigmatizing people!” But as with most things, there’s a lot more grey if you’re paying attention. Yes, some people will tell you to buck up and forget about your diagnosis because they’re actually assholes who couldn’t care less about your problems. But the movement of people most passionate about questioning the biomedical explanation of distress is actually incredibly concerned with suffering. Most of us have experienced a good deal of it ourselves so we’re not about to be dismissive of others’ pain.
We are, however, tired of seeing a broken world blamed on hurting people. We see those who have endured extreme abuse being diagnosed with “personality disorders,” sending the clear message that the ways they’ve learned to cope with extreme circumstances says a lot more about them than about the fucked-up situation they’ve found themselves in. (One study found that 44% of those in a sample with BPD had experienced childhood sexual abuse.) We’re ready for our suffering to be placed in the context of our lives because it’s obvious we didn’t get to where are in a vacuum.
3. Diagnosis can cause harm.
You might be thinking that even if all of this is true, diagnosis can still empower people and help them to make sense of their struggle. In some cases, this is true. Those who have been diagnosed and feel positively about it usually found a sense of validation of their pain. A professional listened to them and said, “All this stuff? It’s real. Here’s a name for it.” And that can lead to finding a community of people with similar experiences who understand. The common denominator in all this isn’t diagnosis, though. It’s having our experiences validated and feeling less alone in our suffering. This can come through diagnosis, but there are arguably less harmful ways to achieve the positives. Diagnosis is, by its labeling nature, a form of pigeon-holing. It provides a framework for people to understand their experiences, and in doing so, gives them expectations about those experiences. People with bipolar do this. People with OCD don’t do that. And people who hear voices? Craazy.
The expectations conferred by the diagnosis are more powerful than is often acknowledged. Those who are diagnosed are given the message that their struggle is chronic, permanent. Having a label conferred on you by a professional can lead to the fulfillment of what we’re told to expect, and to a loss of hope when we learn that our diagnosis is viewed as a lost cause. Just last week, my community of critical psychiatry activists was shaken by the death of one of our own, a brilliant blogger and passionate activist. In a letter to friends and family about why he was ending his life, the primary reason given was that, no matter how much he knew intellectually that they were wrong, he couldn’t shake the distress he felt when seeing how professionals talked about those who (like himself) experience psychosis.
4. The best form of advocacy is listening.
I see so many people talking about mental health awareness and advocacy on social media. Some who don’t struggle themselves even sign up and walk for organizations like NAMI. Behind all the effort is the fuel of the idea that some people just have mental illness and it’s okay. I appreciate the thought. If you legitimately care about our suffering, awesome. If you want to make this world a better place, cool. But the advocacy is too often fueling this not so evidence-based message that me and others like me are just sick. And to that, I say an emphatic “Bullshit.” Because the truth is that we have been living in this wild and crazy world and we have not come out unscathed.
Saying that you’re an advocate is easy when you’re posting on Facebook or walking for donations. But a real advocate is someone who’s listening to people experiencing real suffering. Listening as people navigate their way through life, who doesn’t suggest they kindly take these difficult things to a professional. (Since when did listening become such a commodity?) Putting our experiences down to an illness conveniently lets everyone and everything off the hook. The professionals will deal with us, give us some pills, and off we’ll go. But the responsibility is in our communities. Broken families. Poverty. Abusive parents. Hunger. Communities who leave their own unsupported and alone. It’s easier to post on Facebook and walk, but we’d rather you just show up in your communities for the difficult things.
5. Thinking about suicide doesn’t make you sick.
I think we can all agree that it’s a terrible thing when someone is so desperate and distraught that they think they’d rather be dead. It’s a tragedy and, no matter how we talk about it, we are all heartbroken by this. But we’ve created a culture where thinking about dying is alarming. If you’re feeling depressed and idly mention you might not mind dying, you can easily find yourself restrained and involuntarily held in a psychiatric facility for days. If you tell your therapist you think about dying, you’ll be grilled about whether you’re just thinking these things in a not-so-dangerous way, or if you’re actually going to do the act (despite the fact that studies show that no professionals can accurately predict who is at risk of ending their lives).
I know that many therapists, friends and families really just want to help. They don’t want us to die and so, mentions of dying are met in an extremely alarmist fashion. But thinking about dying isn’t that uncommon to the human condition and it certainly isn’t a sign of sickness. It was an incredibly liberating experience when I finally had a therapist who didn’t demand to know if I thought about hurting myself so he could jot it down and keep an eye out. I got more swept away by such thoughts when I believed the very fact that I was thinking them meant something was terribly wrong. Such strong reactions can also create an environment where those in distress won’t reach out to anyone due to the very real risk of being traumatized by involuntary treatment.
6. It may be called “Abnormal Psychology,” but it’s not that weird.
Many experiences that we see as symptoms of psychiatric disorders could be more helpfully viewed as normal human reactions to adverse experiences. Research has found that childhood trauma, for example, is a predictor of future experiences of psychosis. We have no way of predicting who would or wouldn’t have experiences like that of hearing voices in response to trauma or abuse. Any of us could. Maybe that’s disconcerting for some, but I think it binds us together. None of us are immune, none of us especially fucked up.
Other things that are seen as symptoms specific to various psychiatric disorders can be seen all around us. If you look around for people engaging in compulsions of one kind or another, you’ll find them. Look for avoidance of situations and you’ll find it. Look for impulsiveness and angry outbursts, obsession and depression. They’re all around us, pretty much as normal as being human. Notably, you’re less likely to see it called out when those experiences and behaviors serve purposes that our society rewards or praises, such as intense commitment to career ambitions or self-sacrificing humanitarian work. We see statistics like 1 in 5 people meeting criteria for a psychiatric diagnosis in any given year, meaning that far more than 20% of us are having these experiences overall. It’s almost like it’s not that abnormal. It’s almost like it’s actually pretty human.
7. We desperately need alternatives for emotional distress.
Many people around the world are dreaming up visions of a different future, a future where experiencing emotional distress doesn’t get you shuffled into a funnel of diagnosis, medication and brief cognitive-behavioral therapy (if you’re lucky). The current biomedical paradigm is so entrenched that it’s a bit hard to imagine a future guided by other paradigms. The dominant view continues to be fueled by advocacy organizations and pharmaceutical companies. (Did you know that pharmaceutical companies are the major donors of mental health advocacy groups like NAMI?)
Knowing the critiques is important, but it’s not enough. Luckily, many people are ready to give birth to alternatives. Many non-pathologizing movements within psychotherapy are taking off, including acceptance therapy, narrative therapy, and trauma-informed therapy. Those who are unhappy with their interactions with professionals have started independently-led peer support initiatives, initiatives not co-opted by the biomedical model and “experts,” as much peer support has been.
There are people, like myself, who spend their days reading about psychological studies, critiquing diagnosis and learning about the efficacy of different meds. We are understandably not most people. But there is a huge number of others who are hurting and fed up with the services they have received when vulnerable. They long for other answers. They want the world we’re fighting for. And so we will keep fighting, until we can talk to those we love about our problems without having to tell them what we “have” because disorders is the only way anyone understands psychological distress. We will keep talking despite resistance because there are those who need these ideas. We know, because we need them too.