My Beautiful, Borderline Mind

September 6, 201710 Comments

Not too long ago, I wrote an article about the misconceptions around borderline personality disorder.

“I reject the idea that people with BPD aren’t deserving of competent care and compassion that would allow them to thrive,” I wrote, “and if we dismiss them as being irredeemable, that support becomes more difficult to access.”

Writing that piece was painful. Recalling the ways that people misconstrue my struggles was a deeply emotional process for me.

It also brought to light the very real stigma that still exists around BPD.

I started getting emails.

“My husband has borderline, but he’s horrible,” someone writes. “How can I get him to be more self-aware like you?” (This is almost, word-for-word, a message I received.)

“My partner with BPD is crazy, she’s too much,” someone explains. “What pills are you taking? Do you think that they’ll make her normal?”

This wasn’t the first time I was being held up as some kind of psychiatric achievement. Sometimes even my clinicians viewed me this way. “Most people with borderline aren’t like you,” a clinician told me recently. When I asked what that meant, he told me, “Most of them are just… flailing around, deeply unstable.”

Flailing around. That’s what most people think. Even our clinicians believe we’re chaos embodied, helpless, disturbed.

And thus I was propped up as an ideal. I was the repentant borderline, the good borderline. The more I was perceived as distancing myself from the disorder, the more people applauded me.

This is because the borderline that the world likes the most is the “reformed” borderline — the one that will apologize for being too much, will cut themselves down to be accepted, be neurotic in “acceptable” and small doses, and most of all, disavow any and all traces of the disorder.

In other words, the self-hating borderline is the one that the world loves the most.

It’s an uncomfortable truth, then, when I tell people that I don’t really hate my borderline mind. For all the hell it’s given me — and by extension, the folks who’ve supported me in my recovery — BPD has given me a beautiful intensity that I appreciate.

The world asks me to reject my borderline mind, looking for some symbolic gesture to demonstrate that I hate myself as much as they hate people like me.

In me, they see the redemption of their “crazy” spouse, their unhinged mother, their unruly child.

Every time I apologize for my existence, they are comforted knowing that they don’t have to learn to love someone with borderline — they can wait for the day when their loved one with borderline finally hates themselves enough to be someone else, or hates themselves enough to die.

But there are parts of me that I so deeply love — parts of me that wouldn’t exist if BPD weren’t a part of me, too.

And so long as we view people with borderline in such a reductive way, we fail to appreciate what’s possible for people with BPD. We demand that they erase themselves or punish themselves, rather than coming into their own, realizing themselves fully, and perhaps even learning to love themselves.

It’s devastating to think that, as we characterize people with BPD as abusers that need to repent or as irredeemably lost, we create a culture that denies people with BPD the possibility of authentic healing and self-love.

In the process of my own healing, I’ve realized that BPD is not just a source of trauma, but in some ways, it’s been a source of unique strength.

That’s the conversation that’s missing. That’s the conversation I’m longing for, waiting for.

The love that I’m capable of feeling for others, when it’s no longer fueled by fear, is a remarkable thing. My capacity for seeing the best in others, my ability to love deeply and fully, my sense of connectedness to the folks that I care about — these are things I would never change, so long as it comes from a healthy and secure place.

While I can be reactive, my sensitivity allows me to tune in deeply to the feelings of others. My firsthand experiences of pain allow me to make intense and empathic connections to others who might be suffering. And knowing what it’s like to be left behind, the loyalty that I possess makes me a reliable and caring friend.

What people with BPD need isn’t the greatest possible distance from themselves and from their disorder. What they need is security, healthy attachments, support, and genuine safety, so that they can become someone that they’re happy to be.

My borderline mind can be frightening and self-destructive. Ask anyone who was along for the ride this last year (when I was hospitalized not once but twice) and they’ll tell you as much.

But this mind also has a capacity for intense love, connection, and empathy — a potential that’s so often ignored or missed in people with BPD because of a stigma that leaves no room for us to grow.

For me personally, living with borderline has been retraining my brain to recognize when I am safe, after having lived for many years without protection in the face of complex trauma and PTSD. It’s been a process, too, to create the safety that I lacked for so long, and to trust in it when I have it.

It’s also been important to understand that safety doesn’t have to come in the form of support from others — it’s safety I can create for myself.

But that’s a realization I never would’ve come to if I’d listened to the stigma that told me that having BPD meant I was inherently bad, spiteful, or dangerous, teaching me to fear myself rather than be kind to myself.

Nothing about this process has been “flailing around,” as a clinician once said — it’s been a desperate search to regain the safety I’d been denied. And nothing about that process has been “manipulative,” either. Any misdirection to meet my needs, especially during a struggle I wasn’t prepared for and never asked for, was an act of survival, however flawed or unskillful.

My borderline mind has embedded in it a propensity for chaos that I won’t deny, but just the same, it gives me an incomparable ability to love and be loved. I have a sensitivity that keeps me deeply engaged with my world, a vulnerability that gives me immense integrity and strength, and an intensity that makes me creative and dynamic and alive.

And with the right support, I’ve been able to nurture that empathy and depth in incredible, unexpected ways.

I don’t believe that a diagnosis of borderline personality disorder is a statement of finality, of futility, of hopelessness, and I resent any suggestion that it is. I think for many, it can be an opportunity — a chance to grow, and to take everything we were taught to fear, and find the strengths hiding just underneath.

I wouldn’t be who I am without BPD. And I’m tired of the world demanding that I be anybody else.

7 Signs Your Psychiatrist Is a Keeper

August 24, 2017August 24, 20177 Comments

“I’ll defer to your judgment on this one,” I said to my psychiatrist, shrugging.

“You defer to me a lot,” he pointed out, laughing. “You’re allowed to have an opinion.”

I was?

As a mentally ill person, I was so accustomed to having decisions made for me that I was baffled when my new psychiatrist was giving me the final say on my treatment – not just once but consistently.

That’s when I realized: No one ever told me what a good psychiatrist looked like, let alone the kind of treatment I deserve.

And this is nothing short of tragic because the relationship that we have with our psychiatrist can make or break us. When our mental health impacts every aspect of our lives, having a positive and trusting relationship can be the difference between surviving and thriving.

It took seven years of navigating psychiatry to finally find a clinician that I felt safe with. Seven. Years.

This is due, in large part, to the fact that I simply accepted whatever treatment I was given, rather than advocating for myself.

I didn’t know how to recognize when a clinical relationship was working for me, and when it wasn’t – and I was convinced that it didn’t matter as long as I could fill my prescriptions at the end of the day.

But it does matter. And as both a mental health advocate and a patient, I know now that a caring and competent psychiatrist can make a huge difference.

My current psychiatrist is the-bomb-dot-com. And I’ve been reflecting lately on why that’s the case: What exactly does he do differently? And what should we, as mentally ill folks, start to expect from our clinicians?

There are positive signs that I think we should all look out for in our clinical relationships – not just to help us find a good fit, but to give us the language to advocate for ourselves with every psychiatrist that we meet.

Here are seven signs to get you started.

1. They Look at You

When my psychiatrist came out from behind his desk, pulled up a chair across from me, and grabbed his laptop instead of hiding behind his desktop computer, my first thought was, “What the hell is he doing?”

He had a desk and a computer – why did he need to relocate right across from me?

But there was something about his relaxed posture, his complete attention, and most importantly, his consistent eye contact that totally disarmed me.

I immediately felt more trusting of him – something I hadn’t experienced with previous psychiatrists.

My last psychiatrist back in Michigan seldom looked at me, only to greet me and say goodbye. She stared at her computer, rapidly typing as I spoke, saying very little to acknowledge what I had said.

In hindsight, I realize this is why I always found our interactions to be cold and why I always held back on the details when speaking to her.

Something as simple as direct eye contact can change the entire temperature of a room. I went from feeling invisible to being seen.

I can’t emphasize enough what a difference this has made.

2. You Don’t Feel Rushed

In my work as an advocate, the most common complaint I come across is that folks feel their appointments are always cut short, or that they never have enough time to say what they need to.

The pace of the conversation and allotted time ultimately makes them feel like a burden, and they ask fewer questions, share less information, experience significant anxiety, and ultimately receive subpar treatment because they feel rushed.

I realize this varies widely depending on the clinic and clinicians you have access to, but I encourage folks to explore their options as much as possible.

It’s critical that you don’t feel like you’re always running out of time – this can absolutely impact your interactions and treatment.

I’m always blown away by how long my psychiatry appointments are now, and the fact that my psychiatrist always asks at the end if there’s anything else I’d like to talk about, no matter how long the appointment has already been.

We decide together when everything has been said – I’m never pushed out the door.

And if I open a (non-urgent) can of worms right at the end of an appointment, we make another appointment to discuss it, so I’m assured that it will be addressed and I know exactly when it will be.

Check in with yourself during your appointments. Do you feel rushed? Do you feel like you’re always running out of time? If you do, don’t be afraid to mention this.

3. They Respect Your Agency and Give You Choices

When I was struggling with binge drinking, my psychiatrist didn’t tell me what I should and shouldn’t do.

He made a few recommendations about resources that I could choose from, but then went on to tell me he trusted that I knew what I needed.

He believed in my self-determination, and affirmed that I was in charge. He didn’t criticize me for relapsing, or tell me that he knew what was best for me. He gave me choices.

Not once has my psychiatrist made a recommendation for me without giving me other options, and asking me how I felt about the options I was given.

My psychiatrist told me that he strongly believes in collaboration and self-education. In other words, he believes in my agency. I can’t emphasize enough how critical this is for mentally ill folks who – far too often – aren’t trusted to make competent decisions and are talked at rather than talked with.

This approach is both humanizing and, yes, anti-oppressive, as it upholds the belief that mentally ill people are truly the experts on their own lived experience. And we are.

So ask your psychiatrist what the word collaboration means to them in a clinical setting. This is far and away one of the most important signs about what kind of relationship you can expect, and what your treatment might look like.

4. Your Input Is Valued, Not Discouraged

My psychiatrist is always asking me for my opinions and for feedback, encouraging me to be an active participant in my treatment.

And I’m baffled that this isn’t the status quo.

As an advocate, I hear time and time again, “My psychiatrist was annoyed by how many questions I was asking” or “My psychiatrist was bothered by how much I was pushing back.”

Just recently, someone told me that their psychiatrist actually said to them, “You don’t get to call the shots. I do.”

This is a big, ol’ red flag, and you should head for the hills if a psychiatrist ever discourages you from being invested in your own treatment and wellbeing.

A good psychiatrist wants you to stay engaged. A lousy psychiatrist wants you to be seen, not heard, and to swallow your pills dutifully.

Don’t be afraid to seek out a different doctor if you feel that your psychiatrist isn’t listening. Newsflash: A big part of their job is listening – and if they aren’t, they’re failing you as a clinician.

5. There’s Mutual Trust Between You

During my last bout of depression, I sent an online message to my psychiatrist describing how suicidal I was and what plans I had.

I was truly at the end of my rope, and I didn’t know what else to do.

My psychiatrist didn’t call 911, though. He called me.

He calmly checked in with me, convinced me to go to the emergency room, and when I said I was on my way and that my partner was with me, he believed me. He then called the ER, filled them in on my situation, and told them to expect me.

This completely shocked me. But because I had trusted him and shared my suicidal thoughts, he trusted me to do the right thing. And you know what? I did.

I admitted myself voluntarily – which anyone will tell you is preferable to being involuntarily committed and traumatized.

That kind of trust has been critical in my treatment. I feel respected and believed – and in return, I feel that I can open up and be honest about what I’m struggling with.

If you can’t trust your psychiatrist and the treatment they are recommending, how can you sustain the hope that things can and will get better? And how can you confide in them if you’re closing yourself off?

Trust is foundational in any clinical relationship. Do you trust your psychiatrist? If the answer isn’t “yes” or “we’re working on it,” then it may be time to find someone else.

6. They Acknowledge Your Identity and Trauma History

I’m transgender. And I’ve had so many psychiatrists who have pretended this isn’t the case.

Many psychiatrists have ignored the fact that my hormones do impact my mood. And almost every clinician has misgendered me, referred to me as “female,” or asked me questions that were completely inappropriate.

This is shit that I don’t put up with.

Weirdly, my current psychiatrist is the most trans competent psychiatrist I’ve ever had, despite never advertising himself as such.

I also have a significant trauma history, something that I’ve noticed many psychiatrists feel that therapists are exclusively responsible for knowing about in any detail.

But my psychiatrist has been very open to hearing about that history, and taking it into account when diagnosing and making treatment recommendations.

Which is all just to say, if your psychiatrist isn’t interested in the big picture – the aspects of your identity and history that have contributed to your mental health – they may not be a good fit.

If these things are important to you, they should be important to your psychiatrist as well, at least to some extent.

7. They Are Open to Alternative Diagnoses

When I was eighteen, I met with a psychiatrist who accused me of looking for an “easy way out,” being too young for medication, being too dramatic, and who – after all this – shrugged and said to me, “Which pills did you want?”

(I picked Prozac because I saw it on TV. She prescribed it without question or concern.)

She diagnosed me as bipolar after about ten minutes of yelling at me. And that label has followed me around since then, not being challenged or questioned by any of my clinicians until my most recent psychiatrist revisited it.

And guess what. I may not be bipolar after all. Borderline, ADHD, complex PTSD, OCD – these are labels that I only considered after my most recent psychiatrist had a real conversation with me, and these are labels we continue to revisit and explore.

Diagnoses are markers that can determine the entire course of treatment. Which therapies and medications are recommended can rely on these labels, and how we come to understand our struggles can be framed around these labels as well.

For the last seven years, it’s possible that I was receiving treatment for a disorder I might not even have. This is a huge deal.

This is why it is so incredibly important that we have psychiatrists that don’t take these diagnoses for granted. If something doesn’t feel quite right, don’t be afraid to ask for a reassessment.

If there’s a label that might fit better, don’t be afraid to introduce it to the conversation (because yes, there’s a place for self-diagnosis in psychiatry).

A good psychiatrist is open to new possibilities, and those possibilities can ultimately impact your mental health in big ways.

—

I don’t know at what point I started accepting whatever treatment I got. But I can tell you that now that I’ve had positive psychiatric experiences, I’m unwilling to go back to the days where I was a passive and jaded patient.

I can see the difference a good psychiatrist can make.

The sense of agency, trust, and validation I feel is absolutely priceless – and with each new success, I’m grateful for the amazing clinicians out there who make it a point to respect and uplift us, not perpetuating the harm and abuse that psychiatry can so often enact on mentally ill people.

I expect and demand much more now. And I believe we all should.

This piece that I wrote originally appeared at Everyday Feminism.

Your Bias Against People With Borderline is Still Ableist

August 15, 2017August 15, 20175 Comments

256.

That’s how many different ways borderline personality disorder can present itself, just looking at the diagnostic criteria alone. Factor in co-existing disorders, trauma history, and all of the biological, sociological, and psychological influences that make us individuals? You’ll find that “borderline personality disorder” loosely describes a very diverse group of people.

It’s also been used to describe me. More specifically, as a survivor, it’s been used to describe the sort of “emotional PTSD” I developed overtime as a response to very traumatic life circumstances.

But no one ever wants to talk about borderline as a product of abuse. I continue to encounter people who only view borderline as a propensity for abuse — as irredeemably horrible people to be avoided at all costs.

And painting people with borderline with one uncomplicated, overgeneralized brushstroke? Treating us like a plague, as inherently immoral, as dangerous? That’s still ableist.

We need to start calling abusers what they are: Abusers.

And we need to start calling people who unilaterally demonize people with any mental illness what they actually are: Ableist.

Because here’s the thing: So long as we keep treating borderline as synonymous with abuse, we take a very painful and difficult disorder and deeply stigmatize it. BPD is not a disorder that causes abuse — more appropriately named, it’s a disorder of emotion dysregulation. Abusers themselves, regardless of their mental health status, are solely responsible for their actions.

I’m not denying that there are people with borderline personality disorder that are abusive. But I reject the idea that all people with BPD are abusive, or should be assumed to be abusive. And further, I reject the idea that people with BPD aren’t deserving of competent care and compassion that would allow them to thrive — and if we dismiss them as being irredeemable, that support becomes more difficult to access.

I also think that, too often, we erase survivors who have developed the disorder as a valid response to trauma. We selectively look at abusers who have borderline, while ignoring the high prevalence of trauma in borderline folks. Many of the symptoms associated with BPD, like dissociation and interpersonal instability, are incredibly common in folks who have been abused. In fact, if we took into account trauma history, many (but not all) people with borderline could easily be diagnosed as having complex PTSD.

With all the same symptoms and simply a different framework, we go from being assumed to be abusers to being honored as survivors — that’s the power of stigma.

As a survivor that has been diagnosed with both complex PTSD and borderline, I find myself stuck between a rock and a hard place. To access spaces where I can connect with other survivors, I find myself withholding my borderline diagnosis, so I’m not considered “suspect.”

But as someone who believes that borderline shouldn’t be stigmatized, rejecting BPD as a diagnosis feels like betraying other people with the disorder who are battling everyday against painful assumptions.

I personally find “borderline” to be a difficult word to reclaim, because it’s so entrenched in negative assumptions that it fails to be a useful word when I’m trying to access spaces that help me and mental healthcare that supports me. If I enter into a space as a person with borderline, I am feared and ostracized. If I enter into a space as a person with complex PTSD, I am cared for and affirmed.

Ask anyone if they want to see people with borderline to be well and to thrive, and they won’t necessarily disagree. But ask them to be careful about the language that they use — so that thriving is a real possibility that isn’t impeded by stigma — and you’ll get pushback that these conversations stigmatizing borderline are actually helping survivors.

I’m wondering which survivors are being helped by these conversations, though. Because survivors with borderline don’t seem to count — they’re apparently just a necessary casualty here, as if their trauma doesn’t matter the moment they become too emotionally unstable, too much.

As a trauma survivor, I deeply empathize with folks who have been abused by someone with BPD, and have found community and support by connecting with other people who have been similarly abused. But I believe that we can have conversations about patterns of abuse without ableism — and decoupling “abuse” and “borderline,” recognizing that there are many ways that BPD manifests, is an important first step.

The reality is, we relinquish abusers of their responsibility if we attribute their abuse to mental illness, rather than demanding that they take ownership of the harm that they’ve caused. And when we equate a particular mental illness with abuse, we draw false equivalences that actually harm survivors and psychiatrically disabled folks alike.

The reality is, most people with BPD are far more likely to hurt themselves than someone else (notably, this is true of mental illness generally). And much of the research shows that mental health outcomes improve drastically overtime for folks with borderline (90% will be more or less “recovered” by age 50), especially when they have access to competent care.

But the more that we interfere with folks seeking out that care, the longer it takes for folks with BPD to access it — which, no doubt, contributes to the 1 in 10 people with BPD that complete suicide (a number that, frankly, should be unacceptable to us all and cause for alarm).

Survivors, then, don’t need to be unilaterally protected from all people with BPD — survivors need to be protected from people who exhibit abusive behaviors, regardless of their mental health status. Behaviors like poor boundaries, manipulation, impulsivity, aggression, and verbal abuse are not unique to BPD and never have been; the sooner we recognize that, the better we can support all survivors and not just those we deem “worthy” of that care.

Abusers have never been taken to task by pushing responsibility off of them and onto an inherent “disorder,” and survivors have never been helped by demonizing and pathologizing their trauma.

This false dichotomy — that it’s survivors versus “borderlines,” that we are always at odds — has created the very harmful idea that abuse is a disorder, and that survivors with maladaptive coping strategies are inherently dangerous or untrustworthy. The reality is much more complicated than this, which is that abusers are not a monolith and neither are survivors.

Mentally ill folks are falsely and repeatedly depicted as violent, dangerous, and dishonest. And it’s ableist, regardless of the disorder, to make those generalizations.

While folks with borderline may exhibit behaviors or coping strategies that can be leveraged in abusive ways, it’s ableist to assume that all of them will present that way. Some abusers have BPD, but not all people with BPD will go on to be abusers — similarly, some abusers are survivors of abuse themselves, but not all survivors will go on to abuse, either.

There are many risk factors that correlate with abuse. But those correlations do not cause abuse.

I am close to many people who have borderline, and many of those relationships are beautiful in their own way. I’ve found that, for folks with BPD who have a solid support system, some of the best qualities can emerge out of those struggles. I’ve known folks with borderline to be incredibly loyal friends.

They care deeply. They feel intensely. And that kind of depth, when harnessed, leads people with borderline to be some of the most passionate and empathic people that I know.

I’m not asking anyone to maintain a relationship with an abusive person. I’m also not asking survivors to ignore their gut feeling when a person seems like they could be harmful, or stay in a relationship that seems like it’s heading into dangerous territory.

I’m just asking folks to self-reflect on their biases, and in particular, acknowledge the ways in which those biases can be harmful.

Especially when considering the long history of borderline as a diagnosis being leveraged to dismiss “difficult” patients (especially women) and linked to oppressive ideas about marginalized people, we should all be wary of the conclusions we draw based on a framework that is already, in many ways, flawed.

As a survivor of trauma, there is no deeper betrayal (in my mind) than other survivors ostracizing me because of a mental health diagnosis — especially one that is a direct result of a kind of suffering we both share. Our coping strategies may be different (and the intensity with which we feel this anguish may differ, too), but our pain is very much the same.

If we’re invested in a world in which those struggling with mental illness can access the support, care, and compassion that they need to live well, we need to push back on this idea that disorders like borderline are inherently abusive, and that those suffering from them are disposable.

Dehumanizing people, regardless of their diagnosis or history, is in itself a very toxic behavior. And I believe that people with borderline and survivors alike deserve a hell of a lot better.

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An Open Letter To My Teenage Self (Before You Try To End Your Life)

February 25, 2017August 11, 201719 Comments

Dear Teenage Sam,

I want to tell you where I was this morning.

I woke up with the California sunshine peaking through the blinds, falling on my face, colliding with my eyes. You wouldn’t believe how beautiful it is, waking up like that. It’s my favorite way to wake up, and we get to wake up this way every day now.

While I was drinking my coffee, I was curled up on the couch crying. You and I don’t do much crying these days, because you fell in love, moved across the country, and found an antidepressant that helped you to understand what happiness actually feels like.

(We used to cry a lot. You never understood why – but I promise, you will one day.)

I have a brilliant friend who says that recovering from depression is kind of similar to wearing high heels for a long time – that moment when your feet touch the ground, and you remember what walking is supposed to feel like.

When you wiggle your toes, stretch your feet, and remember what solid ground is like underneath you.

This morning I was crying because I finally understood what that really meant.

Put another way:

Yesterday, I lit a lighter by myself for the first time.

We were always afraid of fire, you know, afraid of something catching fire or getting burned. 25 years old, and I’d never made a fire until last night.

(And I think this can account for, at least in part, why you’ve never taken up smoking cigarettes.)

When I held it in my hand, I knew at last what it was like to hold fire. What it was like to glow brightly without getting burned.

And I learned that it wasn’t fire that we were so afraid of – it was the belief that we could never be trusted with something like that. That, given the chance, we would always destroy something good. That we could come so close, and draw so near, but we could never control the fire.

(And I think this can account for, at least in part, why bonfires and fireplaces always frightened you a little.)

But last night, I held the light between my fingers. I watched the flame flickering and dancing in the dark, and I finally understood that I could trust myself again.

Sam, do you understand what I mean?

I mean that, one morning, you will wake up and know what it’s like to move through the world without aching feet, the ground reliable and solid and soft underneath you. And you’ll know joy not just as the absence of pain, but the PRESENCE of something.

Something ecstatic and whole and hopeful that you didn’t know you could feel.

I mean that, one night, you will know what it feels like to be bright and unstoppable and in motion, without fearing what might happen if you get carried away – if you love too hard, if you feel too much, if you trust yourself too deeply. You will love, you will feel, and you will trust with beautiful abandon.

You will know what it’s like to be in awe of yourself, startled but not afraid.

I promise, there will come a morning – tears sliding down like beautiful gems scattered across your cheeks – and you will say underneath your breath, “This is the way I was supposed to feel.”

This moment will be made possible only because you survived.

I can’t stop you from trying. I know that. I know this because I spent many years looking for you behind closed doors, flashbacks deceiving me, trying to spare you before you stopped breathing.

I know this because I remember how desperate you were to end your pain. There wasn’t a single force in the universe that could’ve intervened.

(When you’re older, you’ll become acquainted with emergency rooms, and meet the doctors that will ultimately diagnose and save you.)

I forgave you a long time ago – for this, and all the trauma to follow – from the moment you woke up, as the room spun and closed in all around you and I knew you needed someone to care for you.

You need to be brave. And you were brave, Sam, you have always been brave.

This is a remarkable thing you’ll learn about yourself soon – that you might always struggle with the impulse to hurt yourself, but you will never lose the instinct to care for yourself, stitching up your own wounds.

Surviving is what you do. You will survive this, too.

I know this now, having courageously and stubbornly picked myself up so many times, a lesson I learned from watching you.

—

If you or someone you know are thinking about suicide, you can always call:

The National Suicide Prevention Helpline: 1-800-273-8255
The Trevor Lifeline for LGBTQIA+ youth: 1-866-488-7386
Trans Lifeline: 1-877-565-8860

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How Many Mental Disorders Is Too Many?

October 22, 2016August 11, 20177 Comments

How many is too many? This is what I asked myself when a psychiatrist – who I was seeing temporarily while my usual was on paternity leave – looked up from a stack of books and a database on his computer and said to me, “This is really complicated.”

When I asked him what he meant, he seemed a little worried when he said, “Your diagnoses and your medications are very… complex.”

I knew that. Every clinician that opened up my file knew that. Every pharmacist that ever filled my prescriptions. Every friend that finally realized how much energy goes into being a mostly-assembled Sam Dylan Finch.

With my bipolar diagnosis reinstated after a hypomanic episode triggered by Zoloft, it could now rejoin my growing list of neuroses: borderline personality disorder, obsessive compulsive disorder, agoraphobia, substance use disorder, and generalized anxiety and/or ADHD depending on which clinician you ask.

This doesn’t even capture the psychotic and dissociative features of a few of the illnesses I deal with.

Some people would call these “co-occurring diagnoses” on a good day but I would actually just call these a straight up clusterfuck.

People like to tell me that “it’s all just labels” and that the words are ultimately unimportant. But they weren’t there ten years ago, when I was a teenager that fantasized about ending my life, tormented by obsessive thoughts and deep depression. Back then, the only thing I wanted was to understand what was wrong.

My psychiatric diagnoses have given me that understanding, and affirmed that it wasn’t just in my head, that it wasn’t made up, that I wasn’t alone.

People can tell me that my diagnoses are just words at the end of the day, but those words are important to me, and that’s what makes them important. And the impact of these disorders is something that I have to live with every minute of every day – so why wouldn’t it be critical to name something that’s so pervasive in my life?

(Honestly, when people tell me it’s just words, I laugh. If you woke up to the sound of a chainsaw every morning with no explanation, would you ignore it altogether in favor of just saying, “Well, it’s just noise”?)

But I would be lying if I said my psychiatric diagnoses always make me feel empowered. The truth is that while I am glad to have a name for a once invisible battle, I’m also afraid.

I’m very afraid. I’m afraid because, like many clinicians have told me, this is complicated. Complicated to understand. Complicated to treat. Complicated to manage. I’m afraid that maybe there’s such a thing as “too mentally ill” or “too many mental disorders,” and that there will never be a “normal” for me – that I’ll always be swimming upstream.

I’m afraid of being hospitalized again. I’m afraid of being hospitalized again and again, because statistically this is likely. I’m afraid of attempting suicide again. I’m afraid of attempting again and again, because this, too, is possible and maybe even likely.

People often tell me that I’m not a statistic. I know this is true. But we can’t also pretend that statistics have no bearing on what my future might look like. I can’t ignore the fact that I am vulnerable. And I go to bed every night knowing this – knowing that I have a lot of good reasons to feel unsafe, even on my best day.

The more diagnoses I’m given, the more overwhelmed I feel.

I am mistrustful and fearful of my own mind – how it seems to always be working against me, how even my best efforts are sometimes not enough to stay in control. I never seem to know what’s real and what’s part of an illness.

I don’t know where each illness stops and I begin. I’ve spent a lot of the last two months confused, feeling claustrophobic in my own head, like I need to get out of here because there’s no room for me, like the wind is constantly being knocked out of me.

In conversations about mental health, we often talk about people who have one or two disorders. And I’m usually somewhere on the sidelines, wishing people like me were more visible – people who have so many diagnoses, they sometimes lose track of themselves, sometimes lose themselves to the fear of what they’ve become and could become.

I am an optimistic and determined person on the whole, and I still lose myself to that fear from time to time. When my psychiatrist quietly acknowledged the complexity of my trauma, I wondered if it’s possible to be so mentally ill that you become impossible to care for, impossible to help, impossible to love.

I spend a lot of time worrying that I can’t be loved.

In a society that tells us we’re broken if we have one mental illness, what happens when you have six?

Can you ever really be honest about who you are and what you’re going through without seeming too crazy? Too hopeless? Too much? This is the perpetual question for me, as someone who is both a person offline (go figure) but also an activist and writer online, who wants to create the space for people to be authentically themselves, but has to navigate the same stigma, too.

I think with all of the fear that I’m experiencing lately, I’ve finally gotten to a point where I’m tired of being isolated like this. I want to create a space for all of us to own how terrifying it is to be told we’re “complicated.”

Being complicated sucks. Being complicated hurts.

I remember that when I was initially diagnosed with just depression as a teenager, I was told by clinicians that my depression was very treatable, always emphasizing a positive prognosis and long term goals.

At this point in my life, when I meet clinicians, we only ever talk about today – we never talk about the future in any capacity. I think because neither of us knows what to say.

And that’s what my psychiatric journey has looked like: a lot of subtle ways in which it was communicated to me, with each new doctor and each new name, that being “complex” means difficulty – difficulty treating, much less supporting or affirming.

But I’m tired of apologizing to clinicians, to friends, and even to readers for being messy. For having more issues than National Geographic. For giving “certifiably insane” a whole new spokesperson. And I know so many mentally ill people with countless diagnoses who are equally exhausted, trying to package things in a more presentable way so people will accept them.

Sometimes people have three, four, five, six, seven, eight, you-name-it diagnoses and if we aren’t making room for those people to show up authentically, we are failing the mental health community as a whole.

This work isn’t about making spaces for some of us. It’s about making room for all of us.

Having co-occurring diagnoses is a scary place to be. Sometimes it’s a hopeless place to be, especially when your clinicians seem a little defeated themselves and the people in your life don’t know how to help you.

Sometimes (often) people don’t even believe me. Sometimes they see it as a chance to write me off as beyond repair. Sometimes my mental illnesses go from being a concern to being a joke. Sometimes I’m dehumanized and pathologized to the point where I’m seen exclusively as a case study. In my life, I’m consistently reminded of how people have no idea how to treat other people with co-occurring diagnoses, especially as they increase in number.

If we can’t create support for folks like me, where else are they going to go? When else can they be themselves?

Psychiatric labels can be important to us, scary to us, even empowering to us – for me, it’s been all three. But one thing they’ll never be is the sole determiner of our worth. We are whole people with value, no matter how few or how many diagnoses we have.

That’s the truth. And it’s a truth we need to make sure everyone – especially mentally ill folks – know.

Not Otherwise Specified: The Pain Of Hearing ‘I Don’t Know’

June 24, 2016August 11, 201715 Comments

For the last six years, I’ve held on tight to my bipolar diagnosis – it kept me afloat in the midst of very turbulent seas. It was a framework that helped me understand my thoughts, feelings, and behaviors; it was a word that helped me find a community of people who were similarly struggling.

I remember listening to Mary Lambert’s song “Secrets” for the first time, with its opening line, “I’ve got bipolar disorder / my shit’s not in order,” and feeling the immediate connection and kinship that only comes from two people with the same endless, chaotic battle.

I felt like that song was for me.

I felt seen in that moment. I felt seen in every moment when someone I knew or someone with visibility came out and said that magic word: Bipolar, bipolar, bipolar, making me feel more and more real every time they stepped out of the shadows.

“Bipolar,” as a label, made me feel safe – like there was sense in the senseless, an anchor in an uncertain storm.

And that’s why, after a painfully long and involved evaluation, it was difficult to hear a psychiatrist say to me, “I don’t know if you have bipolar disorder.”

Mood Disorder Not Otherwise Specified, they told me, otherwise known as the grey area between depression and bipolar. Because they couldn’t just let me have depression, either – they left it ambiguous, leaving me straddling two words and two communities and two answers, pulling the ground out from underneath me.

In so many ways, this label was hollow. It was a question more than it was a statement. I couldn’t turn to the world and say, “This is what I’m going through” or “this is how much it hurts.” There’s no measure of severity, or list of symptoms, or a simple story to tell the world, tell my parents, tell my partner what’s happening to me.

Not Otherwise Specified is an empty place that tries to hold the entirety of your struggle, tries to say everything there is to say, without really holding or saying anything at all.

As if to say, “Your mind is out of bounds and we are out of words.”

My suffering has colored outside the lines like a child with no sense of where it all starts and stops.

I have no sense of where it all starts and stops.

In addition to my Mood Disorder Not Otherwise Specified, they have other things to specify: Obsessive Compulsive Disorder (OCD), which I should’ve suspected but never knew, and Borderline Personality Disorder, which they suspect is the root of my misdiagnosis.

It all feels true enough, but it also feels too new.

This, in addition to my agoraphobia, in addition to my alcohol use disorder, which both come with their own pain, a pain that I sometimes feel all over my body instead of just in my mind.

What happened to me?

There are so many names for my trauma, and so many names still missing, some more precise than others.

Just like that, I was OCD, I was borderline – two things I’d both always been and never been before – and bipolar, the very center of it all, slipped from my grasp and became an unknown, as if it were never here.

And maybe it wasn’t.

People say that we invest too much in labels, that we aren’t our diagnoses. I can’t say for sure that they’re right or wrong.

But I suspect they don’t know the loneliness of suffering something nameless. I suspect they don’t know the confusion of lacking the words to convey your pain. And I suspect they don’t know the relief when the words lead you to someone else who knows that pain, too.

When I lost “bipolar,” I lost more than just a label – I lost the story that helped me make sense of it all, the words to describe my pain, and the connection to other people who understood both.

Not Otherwise Specified is not a story, not an answer, not a connection. It’s a placeholder, a seat saved for something or someone that hasn’t yet arrived.

And what am I supposed to do with that?