Not a fan of #MeToo

Trigger warning: Ironically, this post is about the need for trigger warnings.

My Facebook feed was flooded yesterday with “Me too” posts. Some had no details, others were graphic and triggering. Really the whole thing was triggering. I’m not sure what this campaign is going to do, other than trigger some already traumatized women to relive their experiences and/or become depressed. Or maybe it’s just me.

Yes, sexual abuse, harassment and assault is rampant. Why is the onus on women who’ve experienced these things, and survived them, to open up to the world about it in a very exposed, impersonal forum like Facebook or Twitter – possibly upsetting other survivors in the process? Who does that really help?

Don’t get me wrong. There’s bravery in sharing one’s story. There are survivors out there doing powerful advocacy work.

But this kind of viral media campaign isn’t that. Most of the women (and MEN – why aren’t male survivors being encouraged to join in?) who I personally know have complex PTSD from ongoing abuse, did not post, or simply copied and pasted the original post. Probably because to do more than that was too triggering. Or maybe they don’t want everyone to know what happened to them (and you know what? That’s OK too!).

Is it just me? I looked at my feed again this morning and immediately felt the panic and depression setting in …

Who is this helping? Who is it supposed to help?

And please, if you’re going to do this and post details, PUT A TRIGGER WARNING.

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Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”

Mentally ill = “AHHHHH HELP THERE’S A CRAZY PERSON SHARING A DIAGNOSTIC MANUAL WITH ME GET ME OUT OF HERE!!!!!!”

I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

Signs that you might be parenting a medically complex child

You accidentally put Miralax in your coffee this morning.

Or, you accidentally put Thick-It in your coffee this morning.

You proceeded to drink the Miralax/Thick-It infused coffee because you were either too sleep-deprived to realize what you’d done, or too sleep-deprived to care.

Your energy level ranges from “tired” to “so tired I can’t remember my zip code.”

You send your significant other to pick up your child’s latest prescription, because you are avoiding the pharmacy tech that you caused to cry last week.

You’re on a first-name basis with the person in charge of “incontinence products resupply.”

You make To-Do lists on the discarded backs of Tegaderm bandages.

You are weirdly excited by velcro.

You own a laminator.

Alternatively, you continue to do all your laminating at Office Depot, even though you know it’s more expensive in the long run, because having other people print your stuff is one of your only opportunities for face-to-face human interaction.

All of your mom friends are online.

Your everyday conversation is peppered with acronyms that literally no one understands except therapists, nurses, and your internet mom friends. Like, not even your partner. Some therapists aren’t sure what you’re talking about either.

You spend your less-than-ample spare time educating your elected representatives about how health care actually works.

People get confused when they walk into your home for the first time, because your living room looks so much like an OT gym.

Your child’s OT asks if she can see clients in your living room while her building is being renovated.

Your child’s “pretend doctor” kit is composed of real medical supplies collected from the hospital. (“Hey, wanna put the anesthesia mask on Daniel Tiger? I sure hope he hasn’t eaten in the last 12 hours!”)

All of the ads in your Facebook sidebar are for adaptive strollers and catheters.

You cope with the oddities of your life by making darkly humorous lists about it, and instead of ending with something trite about how precious your child is (which should be everyone’s fundamental underlying assumption because DUH they are your child), you end the list with a little meta commentary on the fact that you made a list about these things. Then you laugh hysterically and take an Ativan.

 

Sanesplaining

I got into an argument with a stranger the other day on a mutual friend’s Facebook page. It started as a debate over the role of mental illness in the Las Vegas shooting and very quickly became a discussion of whether I was qualified to have an opinion on the matter. My opponent, a white male psychology student, told me “You don’t understand mental health.”

Well, maybe that’s true. Maybe I don’t understand mental health. But I think I have a decent understanding of mental illness – primarily the depressive-bipolar-schizophrenic variety and PTSD – from having lived with it for most of my life and having lots of contact with people who live with it, treated and untreated. Of course I am always learning more and there is much that scientists don’t understand either; and my knowledge and understanding of things like substance abuse, personality disorders (including antisocial personality disorder), is more limited.

There is no evidence that Stephen Paddock was mentally ill or that “counseling” would have prevented what he did, had he been motivated to seek it out (certainly money was not a barrier for him). He carefully and deliberately planned the massacre over a long period of time in a way that somebody with the cognitive impairments often accompanying psychiatric illness would be unable to do. His preparations included modifying legally purchased rifles to function as automatic weapons and installing surveillance cameras outside his hotel room.

I hold the unpopular opinion that some people simply enjoy hurting others and are basically bad people. You can label that a mental illness if you want, but these people are often very clever, very manipulative, good at hiding at their crimes and appearing charming. They have no functional impairment or apparent distress due to their actions. Very sadly, I have some personal experience with this, too. What do we call these people? What do we call the child pornographers and the serial killers?

That’s the discussion we could have had – the psychology major and I. But the discussion we ended up having, centered on me and how ignorant I am. He picked at my use of words; he was passive-aggressive and condescending. As it happens, I have not been terribly stable lately, and I snapped.

No doubt, the strong and colorful language that I ended up using, completely discredited everything I’d said. But I was discredited in his mind long before then. Why? Probably because I’m female and not a psych student and I disagreed with him. Disclosing that I’m crazy (and using the word “crazy”) didn’t help my case.

What upset me, and left me in a fragile and agitated state for the rest of the day, was not that someone disagreed with me. I actually enjoy debate. It was the way he picked apart everything I said. It was the implicit sneer in his comments. I hate to think that this person may become a therapist. I hate to think that people will go to him for help and that he will impose his preconceived ideas on their realities, then pick at them and condescend to them when they object. We don’t need any more therapists like that. That’s the last thing we need.

Navigating the world with a brain that filters and connects things unpredictably, that turns on you at odd moments, is scary. Depending on how much insight we have into our condition, it can make for a lot of self-doubt and self-questioning. “Are my perceptions here correct? Is this real? Will I look back on this later and realize my thinking was totally distorted? Or am I right this time? I’ve turned out to be right before.” Having a couple of trusted individuals whom one can consult in these instances of doubt is very helpful. But this dependence on others to confirm or dispute our interpretations of our own experiences makes us very susceptible to gaslighting, and to what I’m going to call sanesplaining.

Sanesplaining is when someone who does NOT have a major psychiatric condition themselves, tells someone who does what their condition is “really” like, what they experience or should experience, how they feel or should feel. It also involves discrediting and disputing the person’s thoughts and opinions. I’m going to use an example here from one of my favorite movies, Benny and Joon.

Joon is a highly intelligent young woman with an unspecified mental illness (mostly resembling schizophrenia). She is cared for by her older brother Benny. After Benny finds out that Joon has begun a sexual relationship with their roommate, Sam (who’s also neurodivergent, with a learning disability and some autistic traits), Benny goes into a rage and throws Sam out of the house. At this point, Joon tells Benny, with strong feeling and conviction, “I love him!”

“Yeah?” says Benny. “Well you are crazy.”

There you have it. Sanesplaining in a nutshell.

Our feelings and thoughts are constantly in question. It’s not always that overt. It might be a family member asking “Did you take your meds?” when we’re trying to explain why we’re upset about something they’ve done. It might be a psychiatrist saying “No, that’s not a side effect of this medication”. (Hint: if your psychiatrist says this, FIND A NEW ONE.) Or it might be some douchey psychology major on the internet, saying “You used a clinically imprecise term, therefore your opinion is worthless. Your lived experience doesn’t matter.”

Functioning labels for mental illness?

I don’t know if this is a recent development or if I’ve only recently noticed it, but for the past year or so I’ve been seeing lots of articles using the terms “high-functioning” and “low-functioning” to talk about psychiatric conditions like depression. Apparently, using them for autism wasn’t bad enough. The autistic community has addressed, many times, the problems with these terms in the context of autism; I want to discuss them in the context of mental illness.

Many of the points to be made are the same as for autism. We all function differently at different times and in different circumstances. The resources available to us – which include money, supportive family, good quality therapists – can make a tremendous difference. A person can have multiple mild comorbids that, together, severely impact functioning, which makes terms like “high functioning depression/autism” linguistically imprecise and misleading. (I don’t have a problem with severity labels. While functioning labels describe the person, severity labels describe the condition. Important difference.) Finally, dividing people into “high” and “low” diminishes the challenges faced by one group and the autonomy of the other, and tends to create division rather than alliance.

There is one big difference from the discussion surrounding autism: mental illness can be medicated. Not always successfully – and medications bring their own problems. But it introduces yet another variable.

One person might be “high-functioning” on medication and “low-functioning” without it. Someone else might be “low-functioning” on medication because of treatment-resistant symptoms. Another person might be “low-functioning” without medication but unable to take medication because they previously developed Neuroleptic Malignant Syndrome, or unwilling to take it for various reasons. And yet another person may be “high-functioning” without medication and choose not to take it, even though it could potentially resolve their symptoms, either because of previous side effects or they just don’t like the idea, etc.

Personally, I function pretty well ON medication … when it’s working. By functioning pretty well I mean I get the necessary things done. My son gets his medicines and his food and his diapers changed, and he gets to school and therapy and medical appointments. Those are the most important things, so I make sure they happen. I make myself acceptable-looking in public even if I haven’t showered in a couple of days. Things like cooking, cleaning, talking to people, those often take a back seat when my mood dips. I don’t always have the energy to brush my teeth, or to walk across the room for something that isn’t an emergency. I do my best though and I have enough good days to make up for what I’ve let slide on the bad days.

Again, this is ON medication. I am also aware that my current medication regimen won’t work indefinitely.

I’ve read too many articles where people who identify themselves as “high-functioning” anxious/depressives don’t even address whether or not they take medication, or why/why not. But if we’re going to talk about functioning, medication matters, because one of the primary purposes of medication is to restore/increase a person’s ability to function in society. It matters, regardless of how you feel about medication. It has profound implications for society, for how we think and talk about human value, work, autonomy, responsibility.

 

Catching octopuses, or, my love-hate relationship with the DSM

When I was in my teens and early 20s, both during the period when I read the DSM like a Bible of self-knowledge and during the anti-psychiatric period where I rejected the DSM altogether, I took it for granted that the diagnostic categories in the DSM reflected actually distinct disorders. I know now that the correspondence is much more complicated.

Here’s a metaphor. A mental disorder is like an octopus. It has eight tentacles, wiggles around, squishes to get through tubes, and changes color. The diagnoses in the DSM are like little cardboard boxes. Now imagine that an octopus is falling through the air (don’t ask me why, it just is) and you’re trying to catch it in a relatively small cardboard box. As it falls, the octopus keeps changing shape and color, and when you finally catch it, three tentacles are sprawled over the edges of the box. Oh well, at least you got most of it, right? I mean, until it crawls out.

That’s basically what psychiatrists are doing when they diagnose: trying to catch an octopus in a box. The actual condition, this complex reality that starts in our brains and is intertwined, whether we like it or not, with our personalities and experiences and interpretations of the world, is too big and shifty and multi-tentacled to fit neatly into a box. Sometimes though, diagnosticians can catch most of it, treat accordingly, and it all makes sense for a while … until the octopus moves. Which it will eventually do, because it’s a living thing.

For those of you who have no idea what the hell I’m talking about, let me be more concrete.  It’s not uncommon for a diagnosis of major depressive disorder (MDD) to change to bipolar II when hypomania emerges among the recurring depressions; for bipolar II to change to bipolar I when the person has their first full manic episode; or even for bipolar I to change to schizoaffective disorder when hallucinations persist outside of manic and depressed episodes. I’ve personally observed these progressions in my own family. Was the initial diagnosis wrong? Not really; the symptoms changed, the presentation developed.

Furthermore, I know a lot of people (most notably myself!) who have outlying symptoms, symptoms that don’t quite fit the diagnosis that seems most appropriate for them. A good example of this is someone with a bipolar II diagnosis who’s had one full-blown manic episode in 50 years. Does that one episode make her bipolar I? The flavor of her disorder is definitely more depression/hypomania. The people I know who have schizoaffective disorder probably fit their diagnosis the best, but schizoaffective disorder is a controversial diagnosis that some psychiatrists want to get rid of, so that just kind of proves my point.

Lately I’ve come to believe that there’s a multidimensional spectrum of psychotic/affective disorders, similar to the (also very complex and multidimensional) autism spectrum.*** And where you are on the spectrum can shift over time, in more than one direction.

Refreshingly, I am not the only person to think this way. There’s even actual scientific evidence for it. The “Kraepelinian Dichotomy,” which made a hard distinction between mood disorders and schizophrenia, is being called into question. (I’ll post some links below for those who want to dig deeper but are too clinically depressed to google.) Let me just state here that in one study, 45% of patients with psychotic disorders did not fit a diagnosis of bipolar or schizophrenia, but had elements of both. That’s almost half.

Here’s a little graph to illustrate how I kind of envision the spectrum:

mood spectrum (2)

 

The Y axis is mood, ranging through shades of depression, hypomania and mania. The X axis is psychosis, ranging from no psychotic symptoms through fluctuating paranoid delusions to round-the-clock hallucinations with anosognosia. Then there’s the Z axis coming out towards you, a third dimension, for anxiety.

You will notice that I took a shocking liberty and put “negative symptoms” (of schizophrenia) on the mood axis, although schizophrenia is not supposed to have a mood component. Well, I may be wrong, but do a google search and you’ll find articles in medical journals trying to figure out what the difference is between negative symptoms and depression. There must be a difference, because the Kraepelinian Dichotomy says these are totally distinct disorders, right? And then you will find stupid answers being proposed such as that depression is different because depressed people feel “sad” and schizophrenic people don’t.

Sorry to break it to you but I don’t feel sad every time I’m depressed, nor is sadness required for a major depressive episode in the DSM. Often as not, I just feel sort of bored and disgusted with everything (anhedonia), and like I’m moving through molasses (psychomotor retardation). My body aches, my brain feels slow and stuffed with cotton, everything takes more physical and mental effort. My speech slows down and I have flattened affect. These are all considered mood symptoms in my case because I’m diagnosed with a mood disorder. However a schizophrenic person could have the same symptoms, and their anhedonia, psychomotor retardation and flat affect would not be considered mood related. So are they really inherently mood symptoms, or do they only look that way in a certain context? And what about psychosis – if I become psychotic during a depressive episode, does that mean psychosis is a mood symptom?

Anyway. Back to the graph.

Coordinates represent a point in time. A person might cycle between two or more sets of coordinates, or move steadily in one direction across the graph. Over the course of a lifetime, some people will have a dot here or there (an isolated episode of psychosis, for instance, or postpartum depression) while others of us will have a big old winding road-map of places our brains have been.

It’s OK to come up with official names (diagnoses) for the most common patterns on these road-maps, as long as we don’t let them limit and distort our perceptions of them. Diagnostic labels are useful mainly for medical professionals and researchers; understanding the particular dimensions and coordinates of one’s own condition is much more useful and empowering to those of us actually living with it.

 

Further reading:

With his book “Why am I still depressed?”, Dr. Phelps helped me begin to reconceptualize my own recurrent depression as a form of bipolarity. Since I have double depression (probably the reason I don’t experience clear hypomania very often), the chart on this page made a particular impression on me:  http://psycheducation.org/diagnosis/bipolar-diagnosis-spectrum-or-yesno/

I totally geeked out over this article. This is the source for the 45% statistic and the whole thing is just super interesting:  A dimensional approach to the psychosis spectrum between bipolar disorder and schizophrenia: The Schizo-Bipolar Scale

This scientific editorial concludes: “Moving to a spectrum concept (be it with categories or dimensions) with recognition of overlapping pathogenetic factors and varying expression (dependent upon both genetic risk and environmental exposure) would allow a confident and clear diagnosis to be offered (perhaps ‘psychosis-spectrum illness’ or ‘ mood–reality disorder’), with a clear explanation that some specific tests and a period of observation will help to clarify the likely course of illness and response to treatment. This would be greatly preferable to the current situation and the inevitable consequences of damage to the therapeutic alliance caused by diagnostic revisions.” If you agree with me that that quote was awesome, and are now meditating on the implications of a term like “mood-reality disorder” (but what is reality??? feeling philosophical now), you’ll enjoy the whole thing: The beginning of the end for the Kraepelinian dichotomy

***Random footnote: I’d like to see a graph with the same concept for the Autism Spectrum, with dimensions including social and sensory components and whatever else autistic people jointly decide is most important.

Traffic tickets: a regressive tax on driving

In case you didn’t know: you don’t have to speed or drive recklessly to get a traffic ticket. I received a ticket last week and I wasn’t even driving the car. My crime? I forgot to put my seat belt on right away.

I was distracted by my 3-year-old having a meltdown in the back seat. A few minutes after my husband pulled out of the parking space, I realized I wasn’t wearing my seat belt and I put it on. But it didn’t matter. In those few minutes, a cop had seen me. It didn’t matter that I’d already fixed my brief mistake. I was given the choice between paying a fine of $82 (plus increases to my car insurance) or going to court. I chose to go to court – taking the risk of court fees being added to a ticket that we already can’t afford.

$82 is a lot of money to us. That’s a month of running water. That’s a week of food.

Every month, do you know what we have left after we pay the rent, the utilities, the car insurance, student loans, our health insurance premium, the monthly payment for Mr. Anarchist’s brief ER visit months ago which we will spend a year paying off even though we’re paying for health insurance? About $200. For a month’s worth of gas, food, hygiene supplies, any medical copayments should we splurge on visits to the doctor’s office. I have asthma and I can’t afford the copayment on my inhalers. We can’t afford Monkey’s clothes and shoes and formula. We’re trying to get Medicaid to cover his diapers. It has nothing to do with irresponsible spending. The math just doesn’t work.

So that’s the financial situation, and the state adds $82 for 3 minutes of not wearing a seat belt.

That’s a tax on driving. And it’s a regressive tax. Somebody making a decent income might not enjoy paying an $82 fine, but they’re not going to go hungry or not fill their medications because of it.