Daughter consoling crying mother

We Need to Talk About How to Talk About Mental Illness

Let’s kick off this party by admitting one simple truth: we suck at this whole talking about mental illness thing.

It’s the dirty laundry your family doesn’t want to share. We don’t really learn about it school. Most of our understanding comes from movies and TV and books that cast it as a dangerous villain. We associate the term with “undersirables”: the homeless, the violent, the drains on the system. The fact that all of this is unsustainable will pop up in the social consciousness now and then, usually when someone hurts someone else (as long as the person doing the hurting is white – but that’s a topic for another day), before fading into the shadows once more. We like it there. It’s scary when it’s in our face.

The simple insight – and the one most repeated – is that we don’t talk about mental illness enough. But where do we begin? Even as someone who believes that effective communication is one of our most powerful tools in situations like this, bringing up the subject of mental illness makes me uncomfortable sometimes. Part of that stems from stigma, part of it from my struggles with my own diagnoses, and part of it from not knowing where to begin.

But perhaps it’s also because the hesitation starts with the labels: mental illness, mental disorders, mental health crises. I hate it. When the conversation starts, the language we use to frame the subject matter immediately conjures negative connotations. It continues as we try to draw parallels to make it all make sense to those on the outside.

It’s like diabetes, we say. A lifetime of management.

It’s just like any other idiopathic illness, we say. You don’t blame someone for genetically-derived cancer, right?

It’s like a disability, we say. We just have to figure out how to operate differently in the world.

But what does all of that really say? There is something wrong with us. We are sick. We are broken. We are crazy. We need to be fixed.  

Let’s Hope This Works

The truth is more complicated than we might like. In recent years, efforts to push conversations on the issue into the public spotlight have, arguably, succeeded. People are more willing to listen to our stories; there seems to be a greater desire to understand the universe of conditions that impact one in four people.

The problem is that each experience conveyed through those stories is distinctive, and may require different language and metaphors to establish an understanding of that narrative. While people may be more willing to hear those distinctive narratives, the missing link has become understanding that one narrative does not foster a full understanding. It’s a snapshot in a mosaic of lives lived under the shadow of a diagnosis.

This becomes more problematic when we recognize that diagnoses are not static. For most conditions we might group under the blanket term of “mental illness,” we don’t have an answer to what causes it. As a result, pinpointing the best way to describe an individual’s condition is achieved by looking for what label best correlates to a given group of symptoms. Should medication be indicated by the psychiatrist involved in a person’s treatment, the prescriptions are written to treat those symptoms; there is no precise grouping of chemicals that can be relied upon once a label is applied. Most of the time, there’s a bit of pharmaceutical roulette involved.

That means a lot of uncertainty for those who have been diagnosed. Some doctors may interpret a grouping of severe symptoms as evidence of an acute manic episode. Others may see it as the manifestation of bipolar disorder with psychotic features. Others may see a psychotic break. The label selected often depends on the psychiatrist in question, their history with the patient, and the intensity of the circumstances. In cases where there is no prior relationship with the psychiatrist, family members may find greater sway in the evaluation process.

Even medication selection can be tremendously varied. There are those who attribute that to pharmaceutical marketing efforts, and there’s probably some truth to that. There’s also the fact that experiences with pharmaceuticals in the past may color a psychiatrist’s opinion of a drug, and that can be a problem when people can have dramatically different reactions to the same drug and the same dose. And speaking of doses, some prefer a heavier dose; others will start at a very low dose and work their way up. The same person might get the same label from three different doctors and be prescribed the same drug at three different dosages.

There are those who give up on the biological approach to treatment altogether. They will swear by cognitive or dialectical behavioral therapy (recognizing, thinking about, and talking your way through distorted thought patterns, for the TL;DR version). They may find yoga and meditation an essential part of regulating their thoughts and emotions. They’ll even argue that the right diet and exercise regimens are all you need.

And then there are people who buck the idea that these conditions require treatment at all. Terms like “mental skillness” get thrown around. They believe that what we view as mental illnesses are simply variations in the way our brains work. They insist that most people diagnosed are simply misunderstood creatives and empaths. They circle around the word “neurodiversity” as a rallying point – but we’ll get back to that in a minute.

The fact of the matter is that none of these really work as a one size fits all framework. Even on an individual basis, one can find themselves stuck squarely in the middle of these perspectives.

What’s It Like to Be A Fixer-Upper?

With the caveat that this is ONE story, let’s use my case as an example. I’ve been diagnosed with rapid cycling bipolar disorder, generalized anxiety disorder, and panic disorder.

There’s a part of me who can totally identify with people who get angry about being told that their unique brains are a symptom of illness. They extol the tremendous creativity and productivity associated with hypomanic episodes. They point to other cultures that see schizophrenia as representative of spiritual enlightenment. They present long, star-studded lists of the people who have accomplished tremendous things in their lifetime, despite having minds that others would call sick. I can’t argue with any of that. I miss being able to see things with vivid clarity, rapidly drawing connections and processing available data and sensory inputs to get a solid understanding of a situation’s nuances.

It’s more than that, though. People assume these labels mean you’re somehow deficient. That they should worry about you being unbalanced, even when you’re not symptomatic and things are under control. When a relapse happens – and they often do in a world of shifting diagnoses and treatments – it’s interpreted as support for the persistent, misplaced concerns. You find yourself wanting to scream that you’re not sick; you’re just different.

At the same time, I cannot see the acute manic and depressive episodes I’ve had as good or healthy. The experiences I had during those time periods were not a function of social stigma or being misunderstood. They were painful and terrifying. I torched my life, burning bridges and hurting the people I care most about. That’s not “mental skillness.” That’s not a form of diversity I celebrate. It’s not something I want anyone else to fully understand, either, because that would require them feeling what I felt, and I wouldn’t wish that on my worst enemy.

Drugs have helped to regulate those experiences. But they’re not perfect. Episodes still happen, though most of the time they are less extreme and shorter in duration on the meds. And though I recognize their importance, I also lament how tired the drugs make me, and how slow I feel I’ve become.

CBT and DBT work; I know that. I’ve read the lit, I’ve talked to doctors and therapists, I’ve listened to the stories from people who had their lives changed by practicing those techniques. I use them when I can. Sometimes it can be effective in cutting off a panic attack at the knees or breaking distorted thought patterns before they spiral in the midst of an episode.

But I’m also a trained debater. It’s not like I can compartmentalize those spiraling voices in my head so they don’t have that training, too. Sometimes recognition of a distorted thought pattern and logical counterpoints get shouted out. CBT and DBT alone are not enough.

I’ve had panic attacks in yoga class, believe it or not. I still do yoga in an attempt to calm my mind and build my ability to focus, but it’s far from a panacea. Meditation helps sometimes, but isn’t a realistic consistent solution for a single mom who’s constantly on the run. I exercise to regulate my energy and mood levels, which makes a difference, but certainly doesn’t kill off the anxiety that plagues me most days. While I try to eat a balanced diet, the costs of some of the more “trendy” diets, lack of evidence to support the claims associated with them, and the picky taste buds of a six year old have sort of rendered that solution worthless.

That’s my experience. Not everyone requires medication. Not everyone will be helped by CBT and DBT. Not everyone will be able to keep things in check without drugs and therapy. For me, no one solution works; it’s a blend of all the worlds, and that blend varies depending on where I’m at in a given moment. For others, it’s a different blend. For some, one solution may be all they need.

Most people have no idea how complicated all this is; how confusing and scary it can be to navigate a world where your mind is cast as your enemy; how desperately we want to be able to function alongside people whose brains are “normal.” The only way things get better is if we talk about it, but we’ve got to find a way to talk about what’s been cast as mental illness that respects the vast spectrum represented.

That’s part of why I like the term neurodiversity so much.

Don’t Call Me “Ill”

Think about it for a beat. When we talk about diversity, it’s often because we’re encouraging understanding. We still recognize that said diversity can result in injustice and pain. It shouldn’t be that way, of course. That’s why we look to cultivate perspectives and solutions that address said injustice.

How do we get to those solutions, though? Consider the conversations we have about privilege. We encourage those in a position of privilege to, essentially, follow the advice of Stephen Covey when he said successful people look first to understand. We ask them to listen. If they don’t, we can’t possibly work together to dismantle said privilege.

The same principles make sense in the context of discussing what we’d previously labeled as mental illness. It’s more about mental diversity. Let’s break it down for further clarity.

The experience of a person of color, for instance, is inherently different from the experience of someone who presents as white; history, social structure, and residual bias combine to create interactions for people of color that a white person will simply never encounter. Similarly, the experience of someone who has received a diagnosis or displays symptoms associated with a diagnosis is distinctly different from someone who does not. Someone who presents as neurologically typical can’t understand what it’s like for their brain to short-circuit, or to have their credibility and agency tainted by perceived weakness. Just as we have to listen to the narratives of those with different experiences to understand privilege in the context of race, gender, socioeconomic status, faith, and more, the only way conversations about mental health are going to be productive is if we are willing to explore the tapestry of narratives that color the spectrum.

Just as it is in discussions about privilege, it’s important to recognize experiences we may not immediately associate with that spectrum, too. Presenting as a member of a minority group illicits one experience; presenting as a member of a different group creates a different one.

Consider how that idea functions when it comes to race. The idea of being “black enough” has been present for years, ostracizing those whose pigmentation isn’t associated with being a person of color. Recently, black actress Rashida Jones, as an example, was told on the red carpet that she looked “tropical”… to which she responded, “I’m ETHNIC.”

There are some who benefit from the lack of apparent association, too. Take, for example, actress Maya Rudolph. She’s owned the ambiguity (professionally, I am not going to presume to know personal perspective), with roles as diverse as Beyonce on SNL and a woman who largely presents as white in Bridesmaids. It’s not a reflection of her identity or self-definition; it is a function of her experiences, and the way people experience her.

These dynamics introduce a whole new layer of complexity to critical conversations about racial diversity and injustice. That type of complexity is also important when we talk about diversity in how the mind functions.

There are absolutely people who experience hypomania, for example, without the negative repercussions associated with a bipolar diagnosis, and their experience (and approach to how they process those experiences) are distinct from someone who has recurrent acute manic episodes. The former may never present as being “mentally ill.” They, like Rashida, may become frustrated by ignorance. Like Maya, they may find rewards in their socially ambiguous status, taking advantage of elevated mood and energy in pursuit of greatness. The latter may yearn for the experience of the former, exhausted by their own intense symptoms. To some end, there may be comfort in their more obvious symptoms, as it can garner more sympathy and understanding (though certainly not always). But broadly speaking, the tension that surfaces between those with diagnoses is real.

All of these experiences matter in the conversation about neurodiversity and mental health, just as diverse experiences matter in conversations about privilege with minority groups. There are intersections and levels of impact and they deserve consideration.

Just as an illustration of how those experiences can be distinctive, I know mental illness certainly wasn’t the conclusion drawn by the people in my life when I was experiencing hypomania. I can’t even count the times I’ve been told that I’m more valuable at partial capacity than most people are at full capacity. It feels good to get compliments like that; it’s also lonely and frustrating because there’s more going on than meets the eye and no one gets it. As things progressed and hypomania transformed into acute mania… well, let’s just say the experience was less complimentary. I wish I could go back to when things were simpler most days. The fact that I am not only diagnosed with bipolar disorder but generalized anxiety disorder and panic disorder as well can make both of those stories difficult to communicate to those who only experience bipolar disorder, either as an individual or someone who has encountered someone with the diagnosis. It’s not black and white or even grey; it’s a kaleidoscope of rebellious neurons who don’t care about your need for clarity.

And just as conversations about diversity in general require recognition of the way difference is processed as the problem – and not the diversity itself – conversations about neurodiversity should stop characterizing its presence as problematic, and start focusing on how it’s approached.

When we talk about how race or gender influences experiences in the justice system, workforce, and social interactions, we don’t say that the problem is being black or a woman. We say that the way we treat people because they belong to these groups is a problem. So why, when we talk about neurodiversity, do we say that the brain is the problem? Can we not say that the brains of those with diagnoses are distinct, and create different experiences? Can we not say that some of those experiences are positive, while some are not? Can we accept those positive experiences without diminishing them, and seek solutions to the negative ones? Can we seek those solutions without further stigmatizing those who have had those experiences by stripping them of agency?

If it’s possible to adopt that framework when discussing diversity in general, can’t we do the same when it comes to diversity in the way our minds work?

We Can Do Better

Listen, I’m not trying to tell anyone with a diagnosis how they should process or approach it. I’m not a doctor or therapist or expert, and I can’t know the distinctive experiences that dictate solid advice in that arena. But I feel pretty confident when I say that anyone who knows what it’s like to do the mental illness discourse tango will tell you that we can do a lot better as a society in our conversations about unique brains.

I’m fully aware that the discussion that’s taken place here isn’t exactly a detailed road map. I’m not sure it would be possible to draw one. So I’m going to ask you a favor. It doesn’t matter if you have a diagnosis or not. Just try.

Listen.

Listen to the stories of people who think like you. Listen to the stories of people who do not. Listen to their differences. Listen to the stories of pain. Listen to the stories of triumph. Listen without the comfort in believing you know how the story ends.

See.

See people. See human beings, not labels. See experiences, not symptoms. See hope. See despair. See the fight it takes to see through the fog and be seen.

Learn.

Learn about your family’s mental health history, and what your risk factors are (there are probably several, but most won’t talk about them without prompting). Learn what the diagnoses applied to the people you care about mean from them (and those folks are there, even if you don’t realize it). Learn how to ask questions without thinking you already know the answers (you can’t). Learn to support those fighting the good fight instead of assuming you know what’s best for them (you don’t).

Speak.

Speak out when labels associated with neurodiversity are traded as barbs. Speak up when someone conflates those labels with character. Speak about persnickety neuroelasticity and finicky neurochemical levels and atypical neural lobe activity as a function of diversity instead of deficiency.

Remember.

Remember that you’re never going to stop learning about this if you’re doing it right. Remember that even if you do share some of my labels, my experience with them is unique. Remember that I face challenges you probably won’t, and have to make decisions you’ll probably never have to wrestle.

!!! BUT !!!

Even if your experience isn’t mine, it’s still unique. You face your own challenges. You make your own decisions. It’s hard. It’s life. And we’re all just doing the best we can.

Maybe we’re not that different, after all?

I am not sick or broken or in need of fixing. Just different. I’m neurodiverse. I’m me. My diagnosis does not define me or my character. It does not determine my self-worth or agency. And it feels amazing to finally say that and mean it. It’s actually one of my feelings that I do want other people to experience – all of you, diagnosis or no. And I’m hoping that if we can listen and see and speak and remember that more of us might get that chance.

Frankly, it’s been this journey through what we call crazy that’s gotten me to this point. Maybe I am mad, but I can’t help thinking that Plato got it right in Phaedrus when he said:

[I]n reality the greatest blessings come by way of madness, indeed of madness that is heaven sent.

Is that really so crazy?

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