Fear of flying

Over time, I’ve learned some of what triggers my hypomanic (and, more recently, full-blown manic) episodes.  I always seem to swing upward in the fall when the daylight starts to change, which is not something I can control, though I do try to modulate it with enforced darkness at night and a sunlamp the rest of the time.  There are other factors that I can somewhat control:  getting enough sleep and food is important, and being active, but not too active.

The problem is that managing my mood swings starts to feel like a full-time job and leaves me with not much time and energy for anything else.  First of all, what does “too active” really mean?  Last night I went to a political meetup for the presidential candidate I favor, and afterward I went to play Magic: The Gathering at someone else’s house.  I really enjoyed both, and when I got home, I felt buoyant energy coursing through me, so that I found it impossible to sleep until about 1 AM, despite taking my sleeping meds several hours earlier.  Then I had to get up early to go to a psychiatry appointment, so I ended up getting 5 or 6 hours of sleep.

Doesn’t sound like that big a deal, does it?  A couple of positive social situations and a couple of missed hours of sleep?  But it is a big deal, because all day, even though I’ve been physically exhausted, I’ve felt more and more manic.  I can’t fully express how frustrating it is that the simple act of enjoying myself and interacting with others for a few hours, or staying up late one night, can cause me to ascend into a manic state.  This state may only turn out to be a couple of weeks of giddiness and productivity, but then again, it might elevate into psychosis and put me in very real danger, as well as tax the patience of the people who have to deal with me daily.

Now, thanks to my mood, I’m in a strange state of waking without being fully present, and even though it’s past my bedtime, I’m incapable of rest.  When I try to lie down and sleep, thoughts swarm so thickly through my mind, like a plague of locusts, that I cannot stand it and must get up to distract myself– by writing this post, as it turns out.  I feel simultaneously irritable and expansive.  I want to see and feel and do everything at once, and yet I loathe everything.  Even though it’s an hour past my bedtime, I’ve opted to drink some coffee and stay awake, because the jittery energy with which caffeine endows me is preferable to being so exhausted yet agitated at the same time.

I deeply resent the fact that there are such potentially serious repercussions to this decision.  I feel like getting out of the apartment to participate in things I seriously care about and enjoy is beyond my healthy capacity.  Too much stress and stimulation.  I start to question whether I can ever have a full, satisfying life, if such minor changes to my routine can cause such a disturbance in my mood.

From there, I start to devolve into self-blame and self-loathing.  I feel that I should be able to do these things, partly because they make me happy, but also because others are able to do them so easily.  I want to contribute to society.  I want to have fun.  I want to be happy.  But my illness repeatedly robs me of achieving these simple goals.  I can’t seem to stay happy without getting too happy.  I have always in my mind the facts that I must not become psychotically manic and that a part of me still hungers for the terrible beauty that mania brings, as well as a heartwrenching resignation to the alternative of being at least moderately depressed all the time.

My euthymia (“normal” mood) is fleeting and fragile.  In the sixteen years since I first became clinically depressed, it never seems to have lasted more than a month, or perhaps six weeks.  That has happened few enough times that I can remember each discretely and count them on one hand.  Add to that a couple of weeks of (hypo)mania each year, and color in the remainder with the cold, black thrall of major depression.

So to me, my (hypo)manic breaks have always been just that: a vacation from what feels like the mundane reality of exhaustion, physical pain, tunnel vision, panic attacks, vomiting, uncontrollable crying, nearly unbearable sadness, hallucinations, fixations on death, drinking binges, and the overall feeling that a thick woolen blanket is wrapped around me, keeping me from feeling or desiring a single thing except to disappear.  I’ve grown accustomed to looking forward to the weeks when I write 200 pages or crochet five projects or exercise 3 hours per day.

Since my psychotic break, I can’t have that pleasurable anticipation anymore.  Every time I feel happy or have a positive thought, I have to check in with myself:  Am I talking too fast for others to understand me?  Am I fixating on something, especially something goal-oriented?  Am I leaping around the apartment laughing uproariously?  Does everything burn too much brighter; feel too ecstatic?  It is exhausting, and it deprives me of much of the non-mood-induced enjoyment I might otherwise experience.

In addition to my policing of myself, I must also deal with the worries of my family and best friend.  They often perceive my mania before I’m willing to admit it even to myself, and from my point of view, they hound me to sleep and eat and relax until I can’t bear the sound of their voices.  I want so desperately to scream at them to leave me the hell alone and stop babysitting me, but most of the time I remain aware that what they are saying contains truth, and that I really ought to listen.

It’s not easy to admit that you can’t trust what your own brain is telling you, and that you must rely on others to tell you what is going on in your innermost self.  If I’m honest, sometimes I do things like stay up late just to show myself that I’m an adult who can do what I please.  Not a very adult reasoning, and I’m not unaware of the irony in that.  But I’ve always been the rebellious one, asking too many questions and trying when I can to circumvent authority.  Sometimes I really want to do things that are bad for me, and sometimes it’s because I know they’re bad.  I know for sure that this is an aspect of why I continually smoke tobacco despite repeated attempts to quit.

I can’t help wondering what kind of future I can have in store if the simplest additions of socializing and contributing to society push me into unhealthiness.  I feel acutely what Stephen Fry claims in The Secret Life of the Manic Depressive, that only 20% of bipolar people are ever able to function at the level they would without the disorder.  (Although I am skeptical about that definition; who knows, after all, who or what we would be without our illness?)

I wonder whether the extent of my life’s accomplishments lies in part-time parenting, writing blog posts, and crocheting stuffed animals.  And that prospect feels hollow and despairing.  I wonder, too, what I would do should, heavens forbid, anything happen to my son.  The only reaction I can begin to imagine is to kill myself, because without him, I really have nothing to live for.

I need more from life.  I need to be able to fill my cup without it overflowing, and as of now, I evidently have not discovered how to strike that balance.  I know that for the foreseeable future I must continue to treat monitoring and regulating my mood swings as my primary goal in life, however disheartening and painful that may be.  I must accept that there is and will be no unqualified happiness for me.  All of my sunshine will carry lengthy shadows.

I’d like to finish by sharing some lyrics from a song I wrote some years ago after a thoroughly unpleasant one-night stand, which I feel captures my problems aptly:

I read the apes stood tall and walked away from the trees

With heads held higher and a sudden desire for fig leaves and apple juice

Well, I was sculpted in an ice hotel,

Far from heaven and I’ve been through hell,

And the breath of life still melts me to my knees.

Like Icarus, I always seem to fly too close to the sun.  There is a burst of glory culminating in a disastrous melting of everything that upholds me.  I either burn hot and fast, or I lay cold and dry as ash.  There is rarely any in-between.  My vigilance must not rest.

Bipolar vs. autism: a personal account

I’ve met other autists and other people with bipolar, but I’ve never met another bipolar autist.  So today I’ll address what it’s like living with both together, and what I see as the similarities and differences between them.

Let’s start with a rundown of how the two conditions are defined and treated by the medical community.  Both are diagnoses listed in the DSM, the Diagnostic and Statistical Manual of Mental Disorders, which lists all possible mental diagnoses and their diagnostic criteria.  (It’s quite the tome, but very illuminating to skim through.)

However, autism, or Autism Spectrum Disorder as the latest edition of the DSM calls it, is a mental condition but not a psychiatric or psychological one.  It is, in fact, a developmental neurological difference, listed alongside mental retardation.  An autist has hardwired differences between her brain and a neurotypical one, though there’s a lot we don’t yet understand about how this works.  (I highly recommend a look at Temple Grandin’s The Autistic Brain for interesting details on this topic.)  As such, it can’t be treated or removed by drugs or therapy.  Certainly, some therapies, like Cognitive Behavioral Therapy, can help a person become more functional, but they do this by instilling new coping skills and healthy behavioral responses, not by removing any part of the autism.

(Side note:  Some people may be more familiar with the term Asperger’s.  With the recent 5th edition of the DSM, this diagnosis is no longer in use.  It, along with Autism and Pervasive Developmental Disorder, has been reclassified in the more expansive Autism Spectrum Disorder diagnosis.  For my thoughts on this change, see The sinking of Aspergia.)

Bipolar disorder is something different.  It, along with clinical depression and related diagnoses, is a mood disorder, a subset of psychiatric disorders– a larger category that includes everything from addiction to OCD to Schizophrenia.  We know that it relates to chemical imbalances in the brain, and that a genetic component seems to exist, but beyond that, not much is understood about its cause.  We do know, though, that in many cases it responds well to pharmaceutical therapies like mood stabilizers (Lithium), anticonvulsants (e.g., Lamictal, Tegretol), antipsychotics (Zyprexa, Geodon, Clozapine), and to a lesser extent antidepressants (Prozac, Paxil, Celexa, Zoloft) as well as, in treatment-resistant cases, to electroconvulsive therapy.  Most bipolar people experience episodes of euthymia– “normal,” stable mood; neither manic nor depressed– during which it’s possible to see what their personality is in the absence of ravages of extreme moods.

Now that’s out of the way, you might notice that I use different phraseology when writing about bipolar and about autism.  This is something I feel very strongly about.  I consider bipolar a disorder I have.  I consider autism a way I am.  Sometimes, people think they’re being sensitive by using “person-first” language to talk about autism, that is, using the phrase “person with autism,” or saying “She has autism.”

To me, this phrasing is not only unnecessarily clunky, but uncomfortable and factually incorrect.  To say I have autism implies it is something separate from my innermost self, something I might (and, according to our conventions, maybe should) be “cured” of.  This is not true.  You cannot take the autism out of the autist.  There’s no way to make my brain neurotypical, nor would I want you to.  If you somehow magically did, I wouldn’t be me anymore.  My brain is my mind is my self, and my brain is autistic.  Therefore, I prefer to be called an autist, because I think it’s the term that’s the most accurate and elegant, but I’ll also willingly accept being called “an autistic” or “an autistic person.”

Also, it’s important to note that I don’t consider autism an illness or a disorder, but I do consider it a disability.  Here’s the difference:  Calling it a “disorder” implies it’s something gone wrong.  I don’t think it is.  There are things I love about it and things I’m not so fond of, but that goes for my overall assessment of myself and basically anything else.  But it is without question disabling for me, because I’m not able to live my best life in current conditions.  The world is simply not built for autists, even though a lot of it has been built by us.  It’s on those terms that disability and ability must be judged.

Bipolar disorder, on the other hand, I have no problem calling both a disorder and an illness, and when talking about it, I’m fine with person-first language, though I also accept for convenience’s sake being called a “bipolar person.”  (“A bipolar” is a bit more iffy and icky.)  I know that there is a version of me that is not either depressed or manic, because this was me for the first 11 years of my life– up until puberty and stress brought on my first depression– and it’s even still me occasionally now.  Would I cure my bipolar if the possibility were given to me?  It’s hard to say, and too hard for me to answer here.  But it is at least conceivable.  And it is also, clearly, a disability, far more so than autism in my own case.  Even if all possible accommodations were given to me, it would still keep me from living the life I desire.

So what’s it like living with both?  Confusing!  Oftentimes my autism-based tendencies are at odds with what my bipolar is telling me to do.  For example, one of the key features of autism is having special interests.  For me, these are language and astronomy.  I love reading about both of these topics, as well as learning new languages and looking at the stars.  However, often I am so depressed that I am incapable of doing any of these things.  I try to read, and the words make no sense to me.  I’ve had a beautiful large telescope for almost a year, having begged for it as a birthday present from my parents, and I’ve barely used it at all because I’ve been too depressed to get it working properly.

Being autistic also makes me particularly susceptible to stress.  I get easily overstimulated by being around too many people or in unfamiliar environments, and I don’t do well with changes to my routine or environment.  This is often at odds with my manic desire to be everywhere and do everything at once.  In addition, such stress is frequently a trigger of mood swings for me, meaning that I have to be very careful not to exceed my limitations, even when I’m feeling grandiose and exuberant, lest the overstimulation push me into full-blown psychosis or a deep depression.

Several psychologists and psychiatrists have tried to “narrow down” my diagnosis to either autism or bipolar, finding it doubtful that I truly am both bipolar and autistic, having never dealt with such a case before.  Those who saw me manic perceived my resultant confidence and doubted my autism.  Those who saw me depressed or euthymic perceived my autism and doubted that I was bipolar.  However, in Februrary of this year I underwent rigorous testing that confirmed that I do indeed meet all the criteria for both.  This may be unusual, but it is the truth.

Another difference is that, by definition, autism has been with me since my birth, or at the very least, since I was quite small.  It’s not something that gets worse with age or sets in later in life.  I was a weird kid.  I’ve always had my special interests, though they haven’t always stayed the same; I’ve always been obsessed with data sets and collecting and organizing information.  As a child, I would spend hour upon hour doing things like memorizing all the countries in the world and their capitals and reciting them in alphabetical order, or staying up all night to record all the times the furnace turned on and trying to establish a pattern.  I lived largely in my head, and wasn’t terribly concerned with making friends; when I did spend time with other kids, I wanted to tell them how we would play and get them to act out what was in my head, not interact with them as equals.

I was always somewhat moody as well, but true bipolar symptoms didn’t hit me until I was 11.  I’d been homeschooled until then, according to my preference to learn more and faster than what school could teach me, without what I thought of as the interference of dull, fussy peers.  Then right around the time puberty hit me, I started seventh grade in a public school.  It was a disaster.  Being autistic manifested almost as a learning disability– I simply couldn’t understand and follow directions, or keep my work in order to turn in.  I also started to realize how different I was from my peers, and was deeply troubled by my inability to interact with them the same way they did with each other.  I was simultaneously bored, overstimulated, awkward, and clueless.

At the same time, I began to feel more and more deeply depressed.  I began a habit of self-harm that would last for years, right up until I discovered alcohol as a destructive coping mechanism.  I hated everything about myself.  I hated that I was autistic, though I didn’t know the term then or that it applied to me.  Suicide hung like a shining star in my dreams, something I didn’t yet have the courage to do but that I felt was inevitable in the long run.  All I wanted was to escape from the horror of my life.

A few years later, I was hit by hypomania for the first time, and it was the hugest relief.  It’s not that I suddenly had all the social skills I normally lacked, but I felt like I did.  I exuded overwhelming and inappropriate confidence– my dad described me as “imperious.”  I felt full of life and laughter and excitement.  Nothing could hold me back or hold me down.  I never imagined at the time that in a dozen years this feeling would progress into psychosis that would fill me with divine light only to leave me hollow, devastated and wishing to die.

Yet throughout it all, I never stopped being autistic.  I never lost my tendency to special interests, and I never really got any better at social interactions until I started drilling myself on them as I describe in Autism and friendship.  I first learned the term “Asperger’s” when I was sixteen, and while I hesitated to self-diagnose as many do, I couldn’t escape how closely the experiences I read about mirrored my own.  It became a special secret I had with myself:  that there was something that explained why I was so different, and that I was not truly alone.  I think this may honestly have saved my life.

The bipolar diagnosis, on the other hand, came out of the blue and wasn’t applied until I was 22.  I’d been experiencing what I now know was irritable hypomania.  I would stay up for days at a time writing and writing and writing on a novel I’d been working on, but it felt both good and odd.  I tried to talk to my then-husband, who in response was, as usual, verbally and emotionally abusive, so without his support I sought counseling.  The therapist I saw gave me my first look at the DSM description of Bipolar II and without hesitation I said, “Yes!  That’s me!”

I tentatively brought up Asperger’s, as it was then known, with her, but she brushed it off, assuming that it was an either/or problem, not a both/and one.  So I never brought up the topic with a professional again, until in 2012 I saw a new and very excellent therapist, who suggested it to me of his own accord.  “What do you know about autism?” he asked me, and I cautiously said, “I know some.  I feel like it describes me.  But I don’t want to self-diagnose.”  So he gave me a reading list and some website addresses, and the end result was that I came out knowing for certain that I was both autistic and bipolar.

I am lucky now to have both a therapist and a psychiatrist who accept who and what I am, and try to be sensitive to my unique needs.  I wonder sometimes if there are others out there struggling with the same dichotomies that have long troubled me.  I know now that developmental differences and mental disorders are not mutually exclusive, but can add up to something that is special and brilliant; devastating and debilitating; confusing and congruent.  I am one among many but also one among few.  Bipolar and autism have worked in tandem to make me who I am today, but I view them very differently, and think they should be discussed on very different terms.

One is an illness.  One is a brain difference.  Both have contributed to who I am today.  A bipolar autist; an autsitic bipolar person.  The important thing to me is that I understand both, and can with that understanding move on to a better life, which I would never have had, had I listened to those who presented them to me as an either/or.  The brain is a complicated thing, a combination of hardwiring and chemicals and habits, and my brain demands a special understanding that few have been willing to tolerate.  It’s been hard to learn to understand this, but always worthwhile.

I hope that this exposition can help both those who are bipolar and those who are autistic, as well as, perhaps, the tiny subset who, like me, are both.  There is truly no end to the variety of types our brains endow us with.  Wherever on any spectrum you lie, there is beauty and pain, life and death, ignorance and awareness.  And knowing who you are is the first step toward both change and acceptance.

Autism and friendship

I wrote recently about how disabilities, and autism in particular, can affect romantic relationships.  So I thought it was time to address the related topic of how being an autist has affected my ability to form and maintain friendships.  I’ll focus on adult friendships here, because I think they are of a fundamentally different nature from childhood ones.  I may blog more in the future about my experiences as a child.

As a teenager, I was a confirmed loner.  I simply lacked the skills to form even the most basic of friendship bonds, and most of the time I wasn’t really interested in spending time with others, anyway.  But I realized that I needed to be able to relate to people better to succeed in life, and also to avoid humiliating myself, which has always been one of my biggest fears, perhaps because it’s happened so many times.  I did get lonely, and more than that, I desired approval– validition– confirmation that I wasn’t as unlovable as I felt.  So I devoted myself, over the course of several years, to watching and learning, and by my early twenties, I had developed enough skills that I was able to engage in relatively standard ways– up to a point.

Shortly after my son was born, I moved to a new city, and via receiving breastfeeding counseling and taking my son to a toy lending library, I encountered some other parents with values similar to my own.  I was invited to a support group, a playgroup, and several birthday parties, and this led on to occasional one-on-one playdates.  Being a parent greased the wheels:  We had something designated acceptable and mutually interesting to talk about, and when there was an awkward silence because I was lost, it was easy to redirect attention to something the kids were doing.

Nevertheless, such socializing remained a nerve wracking and exhausting experience for me.  I looked forward to it, but I also dreaded it.  It was hard to remember what things were rude or too blunt to say; how often to nod, smile and say “uh-huh” to show that I was listening; how much it was okay to talk about my special interests without seeming weird; when it was time to talk without interrupting.  And I never did get the hang of eye contact (and still never have.)  If I tried, I simply stared, which made it appear I was being creepy or romantically interested, and it made me uncomfortable anyway, so I just gave up on that part.

Partly because of these difficulties, I never really considered my “mommy friends” to be real friends– more like acquaintances.  We spent time together because of two factors: our childrens’ ages and our parenting style.  I liked some of them a lot and wished I could get to know them better, but I didn’t know how, and frankly, they didn’t show any interest or make any effort, so I felt that I would be imposing on them if I tried.

In some cases, this was really deeply hurtful.  In one case, I met two women at the same time as they met each other.  I chatted with each of them, and I went on to spend time with both.  I really liked both of them.  However, it was clear that they “hit it off” with each other far more than they ever did with me.  It went on that while I would have the occasional playdate with either of them, they became very, very close.  I knew this because I heard each of them talk about the other, and because I was privy to their Facebook interactions.  They went for impromptu walks together.  They called each other on the phone just to talk, and talked about their feelings.  They invited each other to family gatherings.  They talked openly about how much they “loved” each other.  (Note, this was a platonic relationship; both were involved with members of the opposite sex.)

I never did any of these things with either of them.  I wanted to.  But I didn’t, and I didn’t know how.  I cried about it.  I drank because of it.  And I felt pathetic for doing both.  I didn’t know when it was and wasn’t okay to call someone, or what to say if I did.  I didn’t think it would be okay for me to talk to them about my feelings, because they didn’t with me.  If I messaged them and suggested a walk or lunch on the same day or the next day, they invariably had something else planned (or said they did.)

At one point, I found out on Facebook that they were having a crafts group with several other mutual acquaintances.  Now, I was and am one of the most crafty (in the sense of making crafts, not of being manipulative) people I know, and I knew that they knew this because I would make things to give to them.  Yet they never invited me to this group, and I was at a loss as to what to do.  Could I invite myself?  Was there any point, if they clearly didn’t want me there?  I was devastated, not so much by not getting to go but by feeling left out and unwanted.  I blamed myself– probably rightly?  maybe not?  I don’t know even now– for being awkward and unlikeable.  It seemed like a confirmation of the way I’d judged myself all my life.

One of the things about autism is that it doesn’t just make you awkward, it makes it impossible for you to know what other people are thinking.  You spend all your time wishing fervently that people would just tell you what they want from you.  I constantly thought, “What exactly am I doing wrong?  Why won’t they just tell me if I’m being rude or inappropriate?  Or if they just don’t like me that much?”  I expect they were sending out plenty of cues that I just didn’t have the capacity to read– my experience with watching, mimicking and practicing had taught me how to go through the motions, but not really how to understand the content.

After that experience, I distanced myself further from my “mommy friends,” because I felt alienated and unwanted.  For several years, I really didn’t have any friends at all.  I never saw or talked to anyone except family and my abusive romantic partner.  Then I went back to college and entered a new relationship, and both of these introduced me to new people who seemed to have some interest in spending time with me.  By this point, I’d further developed my skills; I understood roughly how to “hang out” and play video games or make some somewhat stilted small talk.  I finally managed to accumulate a handful of people I’d call, as the Brits might, “mates,” if not close friends, and interacting regularly with them allowed me to relax some, be myself a bit, and feel like we shared an actual connection.

That’s basically where I am now.  But I’ve continued to experience difficulty and disappointment.  I generally find that people do not take the initiative to spend time with me or call me, and that I must therefore always do so; even when I do, I frequently fail to get any response.  In some cases, I’ve interacted fairly regularly with a person, only to have them suddenly stop responding at all, or blow me off every time.  This confuses me.  Again, I am left wondering, am I doing something wrong?  Do they really not like me that much?  My best friend, my former Person of Interest, gets irritated when I worry about this, and tells me, “That’s just how friendships are.  It takes hard work, and most people don’t put in the effort.”  Okay, so if that’s the case, how do they ever manage to spend time with people other than me?  How do I develop a close enough bond that they will actually think of reaching out to me of their own accord?  How can I be sure that the problem isn’t actually that I’m screwing up in some way?

So my message to fellow autists is, keep trying, and things will get better; they won’t be perfect, but don’t feel alone when it doesn’t always work out or you have trouble making and keeping the friendships you’d like.  It’s not your fault that you can’t read people.  It doesn’t make you a bad or worthless person if you do get rejected, or think you are.  There are loads of us out here who feel the same.

And to the neurotypicals who care about autists, please, just be straight with us.  If we’re acting inappropriately or just in a way you don’t like, say so– not in a mean way, mind you, but with kindness and care.  Interpersonal relationships are harder for us than you can know, but that doesn’t mean we don’t want them and want your approval.  Maybe take the time and put out the extra effort to let us know if you do want us around, because otherwise, we’ll likely assume you don’t.  Chances are we’ve been hurt a lot, and when you just exclude or ignore us without giving us a reason, we really don’t understand why.

Ten things never to say to mentally ill people

One of the frustrating aspects of having a mental illness is dealing with stuff people say, even though they often mean well.  Here are just a few examples of things I suspect most mentally ill people are used to– and very tired of– hearing.

1) “But you seem so normal!”

Perhaps this is meant as a compliment, but honestly, it feels much more like an accusation– “you can’t really be sick.”  People with many forms of mental illness go through patterns of remission and relapse, so how you see us on any given day may be far from representative.  For example, I am currently euthymic (in a “normal” mood phase) but a month ago I was hearing voices from the heavens and believing I was a chosen conduit, and a week after that I was seeing rotting corpses hanging from my ceiling.  Not “normal”, right?  Also, many of us are great, sometimes to our own detriment, at putting on a happy, calm face around others, when we are being ripped apart inside.  And finally, sometimes this “normalcy” is the result of a treatment regimen that we have to work hard to settle on and stick to, which is not something “normal,” i.e. healthy-brained, people can really understand.  Don’t judge us by what you see; listen to what we have to say about our experience instead.

2) “Have you tried natural remedies?”

This is a tough one, because people who say this genuinely think they’re being helpful.  However, it’s important to remember that many psychiatric disorders are very difficult to medicate.  In the case of my illness, bipolar disorder, upwards of half of patients are classified as “treatment resistant.”  Many people spend years working with professionals to develop a successful treatment regimen of drugs and other therapies that are scientifically proven to work.  This can be a tenuous balancing act of avoiding side effects, toxicity and drug interactions.  In most cases, “natural” remedies are not only unproven but possibly unsafe, especially in combination with prescription drugs.  Keep in mind that whatever you have to suggest, we’ve probably heard of it before, and it can be deeply frustrating to be bombarded with well-meaning suggestions from people who are not experts in psychiatry.  Please, leave clinical treatment to the professionals.  If you want to be helpful, try instead asking what you can do to support the person.

3) “At least it’s not cancer!”

This is a deeply offensive and dismissive statement, even if it’s intended to make someone feel better.  Implying that psychiatric disorders are less serious or destructive than physical ones is not only unkind but flatly inaccurate.  Mental illness not only ruins but, all too frequently ends, people’s lives.  According to Stephen Fry’s outstanding documentary The Secret Life of the Manic Depressive, only 20% of people with bipolar ever become fully functional, while 50% will attempt suicide and nearly half of those will succeed.  Those are abysmal numbers for any illness.  Furthermore, we deal with many of the same difficulties that physically ill people do:  drug side effects, exhaustion, and physical pain, just to name a few.  Dismissing the severity of our problems makes us feel worse, not better.

4) “My ______ had that and here’s how they got better.”

I remember a specific conversation I had years ago in which a woman I barely knew told me in detail about her father’s undiagnosed mania and how he was able to “talk himself down” from it, and that therefore drugs and therapy aren’t really necessary, but actually inhibitive of self-help.  Another told me how fish oil had cured her brother’s depression; these are just a couple examples of the same basic conversation I feel like I’ve had a million times.  It’s problematic because no two mentally ill people, even those with the same diagnosis, are alike.  Our treatment needs to be based on scientific evidence obtained through clinical trials, not anecdotal evidence you’ve gathered from your limited frame of reference.  Assuming that our illness takes the same course as that of someone else you know (who may or may not have even had or needed the same diagnosis) keeps you from understanding what our experience really is and what we actually need.

5) “Everyone seems to have that nowadays!”

Short answer:  No.  They don’t.  You probably have that impression because of the way clinical diagnostic terms are bandied about inappropriately, for example, saying of someone emotional and moody “She’s so bipolar” or “borderline,” or of someone shy and awkward “He’s so Aspie.”  (Although autism is not actually a mental illness, this pertains.)  There are also many people who self-diagnose, to varying degrees of accuracy, often without understanding the reality of living with a severe disability.  While many disorders are more common than you might expect– in the case of bipolar, it affects about 1% of the population, so that if you have several hundred facebook friends, at least a few probably have it– they are not catch-all terms for every difficulty and behavior problem you perceive.

6) “Have you prayed/meditated/sought spiritual help about it?”

As an adamant, skeptical atheist, I particularly resent this one, but I would still resent it were I religious.  Frankly, my spiritual life, unless I choose to share it with you, is none of your damn business.  Carl Jung’s waxing on about the need for religion notwithstanding, there is absolutely no scientific evidence that prayer, meditation and other such practices can either treat or cure mental illness.  Some people may find comfort in spirituality, and that’s great, but it doesn’t take the place of medication and professional therapy, nor is it a necessary component of treatment.  My illness should never be a pretext for you to proselytize or cast moral judgment on me.

7) “Think about people worse off than you.  Lots of people would kill to be where you are.”

Again, this is deeply dismissive and hurtful.  It gives the impression that you clearly do not understand the depths of our pain and difficulty.  You are judging us by external factors like first-world citizenship, economic stability, and family support, which are all wonderful things but do not do away with or even necessarily diminish the anguish and dysfunction with which we live every day.  If you think my life is so great, I invite you to switch brains with me any day and see how you like it.  Hint:  You won’t.

8) “That’s a form of genius!”

Movies like The Aviator, about OCD sufferer Howard Hughes, and A Beautiful Mind, about schizophrenic John Nash, have contributed to this perception.  It’s true that people with many mental illnesses, such as bipolar and schizophrenia, can be highly creative, thinking in ways that a healthy brain rarely does.  However, such illnesses– and often the drugs that treat them– are equally likely to hold back mental function.  Some people with mental illness are very intelligent and creative.  So are some people with healthy brains.  And some are not.  Mental illness is, well, illness, nothing else.

9) “You’re really just an addict.”

Many, many people with mental illness, myself included, struggle with substance abuse as a form of self-medication.  And in many cases this does make matters worse.  However, it’s crucial to recognize that the substance abuse is a result, not a cause, of the underlying mental problem– a damaging coping mechanism to which we turn in absence of other effective treatment.  For more on this scientifically supported model of addiction, I highly recommend the book The Sober Truth, by Lance Dodes, and particularly chapter five, titled “So, What Does Work to Treat Addiction?”

10) “This famous person had/has that and was a great success, so you can be too!”

Recall again the numbers I stated above on the outcomes for people with bipolar disorder.  I am no expert on the numbers for any other disorder, but I do know that a few outstanding cases– again, like Howard Hughes and John Nash, and also like Stephen Fry, Richard Dreyfus and others– are far from representative.  There are a multitude of external and internal factors that determine whether someone with mental illness can create a fulfilling, successful life, and for many they are not advantageous.  Asserting this is no different from saying that because some people who drop out of school become rich and famous, anyone who drops out can be.  In some cases, such limitations prove not to be an obstacle to success, but in most, they do.  By positing illness as part and parcel of success rather than as a disability, you dismiss the pain and frustration most of us experience when we fail, so frequently, to measure up to the expectations of both society and ourselves.

In conclusion

It’s understandably hard not to feel like you’re walking on eggshells when talking to and about disabled people.  Everyone makes mistakes when trying sincerely to be helpful; that doesn’t make you a bad friend or human being.  However, a few simple things to keep in mind can reduce the chances of you saying insensitive, hurtful things like the ones I’ve listed.

Listen to us.  Don’t speak for us, and don’t assume.  You are not an expert on our experience, and your active listening and informed support is far more valuable than anything you could say.  Don’t dismiss us.  You don’t need to try to make us feel better about our situation; this feels patronizing, and furthermore, downplaying our suffering is insulting, not supportive.  And lastly, be ready to be corrected, and to apologize.  Don’t take umbrage if we say “that’s not accurate” or “that’s not helpful.”  We have the right to stick up for ourselves and to educate you about what you don’t understand.  In general, just let us guide the discussion.  Ask questions, pay attention to the answers, and don’t be full of yourself.  If you can do that, we will get along just fine.