Category Archives: mental health

Which Is Worse: Reality TV or the commentary on it?

I’d heard mentions recently of the show Hoarders, on A&E. (I’m not going to link to their site.) The show, from what I gather, is a series with episodes focusing on individuals who compulsively hoard possessions. I’ve never watched it and do not plan to, as I’m extremely uneasy about television shows that focus on people in crisis to, well, entertain other people. I have the same issues with Intervention (also an A&E show) and the Celebrity Rehab/Sober House/Sex Addicts shows with Dr. Drew. I understand that on some level, they could be useful or educational or contribute to diminishing stigma and demystifying therapy and counseling, but mostly it just feels like taking advantage of people who are dealing with addiction or disability.

This is especially true as the core of all reality tv is, of course, drama – so the shows focus on people in absolute crisis, at proverbial rock bottom, relapses and failures. And the drama is heightened when the person’s disability or addiction is as extreme as possible. So the Hoarders show focuses on people who are extreme hoarders, having lost friends and family because of their compulsions, not someone who has a drawer in the kitchen filled with old takeout menus. This extremely heightens the message that the person in the show is an “other,” a “freak,” to be gawked at.

And that’s the problem – even if I never watch these shows, there are still people who watch them and then talk or write about them. I’ve managed to avoid the worst of it, but commenter Penny, catastrophe discovered this “gem” at Jezebel and sent it my way as an example of the ableism at its extreme. It’s bad enough that before I go any further, I should warn you that some of the quotes are truly horrifying and you may not want to read them. We start off on a great foot with the title: “Sometimes, A Hoarder Just Can’t Be Helped.”

The very first sentence of the post informs us that the author found Augustine, the woman who is the focus of this episode of Hoarders, “frankly, very hard to empathize with.” Red flag! You are not watching this television show to determine whether the person with a disability is worthy of your empathy! Or rather, if you are, you should turn the tv off immediately. This is a real woman, a person, a human. The premise of the show, indeed the title of the show, indicates that she has a disability that has had a monumental effect on her life and functioning. If you are watching a show about her without empathy, then you’re just pointing at a sideshow freak.

The post then goes on to applaud the professional counselors who come to help Augustine, “who miraculously remain positive and chipper throughout the entire ordeal” even though there is stuff in the hoarded material that the author clearly considers to be super duper gross. But in the author’s eyes, Augustine’s biggest sin is not hoarding icky things, it is that she “has no remorse for what her actions have done to her family and her community … and absolutely no gratitude toward the people who are trying to help her stay in her home. She only blames other people for her situation.” This is the point in the post where my jaw actually dropped open. Yes, the woman who the show profiles specifically and explicitly because she has extreme compulsions to hoard … has strong compulsions to hoard! The author seems to think that Augustine has been hoarding out of spite or stubbornness and now that these people are helping her, she will just “snap out of it” and repent. But that’s not how a disability works. And blaming Augustine for not being magically cured of her disability during the course of taping is cruel and ableist.

But wait – it gets even worse. We are not done applauding these saintly folk who have taken time out of their days to help this woman with a disability who does not even appreciate all that they are doing for her. “Watching this episode, it’s impossible not to be struck by the generosity and caring of the people who are helping Augustine, and to wonder if their resources couldn’t be used helping other people who actually want to change.” Yup. That’s a direct quote, really. Or, in other words, Hey, we sent a counselor down there, and she didn’t immediately change her entire life and patterns of thinking. So fuck her. We’re done with her. Because this woman with a disability didn’t act the way we wanted her to. “Augustine seems less like a person with a compulsion caused by feelings of loss who desperately wants to get her life in control, and more like the clinical definition of a sociopath.” Or, because she wasn’t disabled in the way the author expected her to be disabled, we should give up on her.

So for me, the commentary is worse than the show itself. The show just places the person with a disability in the public eye – it takes a member of the public to do the pointing and laughing.

Reading List: Mental Health Diversion Courts

Yes, this looks like our daily Recommended Reading posts that Anna does for us every day – but it’s different. Reading List is a selection of links around a single issue or topic, as a start for those interested in exploring it further. The initial edition, on mental health diversion courts, was sparked when I came across the first article:

Susan Thornton, “A court for mental illness,” Denver Post, Nov 15, 2009

History will be made in Colorado’s 18th Judicial District this week when Colorado’s first districtwide adult Mental Health Court will convene to hear the case of “Robert,” age 37. Robert has bipolar disorder. He frequently goes off his medication, hasn’t followed through with treatment plans, has attempted suicide, and has been hospitalized three times. He has several prior convictions for shoplifting, violating restraining orders and resisting arrest. Now he says he wants to figure out a better way to live, and has volunteered for the Mental Health Court.

The court is a specialized treatment court designed to divert nonviolent felony offenders who have a serious mental illness such as bipolar disorder, schizophrenia or major depression, as well as those with a combination of mental illness and substance abuse. It is not open to those with violent behavior or to sex offenders.

Most of the people who’ll come before the court have been repeatedly in and out of jail. They’ve been charged with minor offenses that result from their mental illness, things like being a public nuisance, drinking in public, and shoplifting. They’re charged with a felony because of the cost of items they’ve stolen or damaged. Usually they have been off their medications because they can’t afford them, and live in and out of shelters.

Each participant will have an intensive treatment plan, including case management and medications, and will be closely monitored by probation officers and mental health professionals. Treatment addresses the mental illness, recurring substance abuse and criminal thinking. There will be incentives for compliance, and sanctions for non-compliance that may include re-sentencing.

This article by the Bazelon Center for Mental Health Law gives a good overview of why the current use of the criminal court system to address mental illness is so problematic, including these statistics on the scope of the problem:

  • Approximately a quarter million individuals with severe mental illnesses are incarcerated at any given moment—about half arrested for non-violent offenses, such as trespassing or disorderly conduct.” This does not include more than half a million probationers with serious mental illnesses.
  • Sixteen percent of state and local inmates suffer from a mental illness and most receive no treatment beyond medication.”
  • During street encounters, police officers are almost twice as likely to arrest someone who appears to have a mental illness. A Chicago study of thousands of police encounters found that 47 percent of people with a mental illness were arrested, while only 28 percent of individuals without a mental illness were arrested for the same behavior.

The same Bazelon article also has a nice outline of the role of mental health courts (as well as detailed analyses of different models of these courts and recommendations for improvements):

From the criminal law perspective, two rationales underlie the therapeutic court approach: first, to protect the public by addressing the mental illness that contributed to the criminal act, thereby reducing recidivism, and second, to recognize that criminal sanctions, whether intended as punishments or deterrents, are neither effective nor morally appropriate when mental illness is a significant cause of the criminal act. The goals of mental health courts, then, are: 1) to break the cycle of worsening mental illness and criminal behavior that begins with the failure of the community mental health system and is accelerated by the inadequacy of treatment in prisons and jails; and 2) to provide effective treatment options instead of the usual criminal sanctions for offenders with mental illnesses.

There’s also a nice overview of the mental health courts at Frontline, from their series “The New Asylums,” devoted to the stories and issues of people with mental illness in state prisons. The site lets you watch the whole program online and provides a separate complete transcript. There’s also an interactive state-by-state map so you can find information on specific states.

One reason these courts are becoming increasingly popular is because of their fiscal effect – it is more difficult and expensive to incarcerate a person with mental illness than a neurotypical inmate. For the super-wonky, here’s a detailed report from RAND on the fiscal impact of a mental health in Allegheny County, Pennsylvania. It found that the costs of providing treatment and services was more than offset by the savings in jail costs. The National Center for State Courts also has a great list of resources on these courts, including lots of studies on fiscal impact.

This is a big part of why there’s significant governmental support for these courts. The Federal Department of Justice provides assistance and resources to communities who want to begin mental health courts. The Council of State Governments Justice Center provides technical support and information to communities working with the DOJ, including a list of essential elements in a mental health court and a practical guide to mental health court design and implementation.

I am not nearly as familiar with court systems outside the US, but even some cursory googling shows that these exist in some model in places including South Australia, England (although the report notes they’re not achieving their potential), Canada, and, um, some places in the European Union.

I also include the significant caveat that the ideas behind and goals of these courts are only as good as their implementation, and that can vary a lot. Not every court is great and even if they worked perfectly, there would still be a lot of problems with the criminal justice system’s relationship with people with disabilities overall.

If you have information on mental health courts in other areas or other great resources, please drop them in the comments!

I don’t have a “real” mental health condition, I’m just weak, and other bad self-talk

One of the hardest things for me in dealing with my mental health condition is my very strong theory that everyone else is having exactly the same problems that I am, but they’re just 8 million times better at dealing with them, and hiding them from everyone else. And thus, I don’t talk about my mental health, much, because everyone else is obviously coping with the same thing, and I’m just a big whiner who can’t cope and fails at everything and is useless and should just run away and everyone will be better and– stop.

For extra special bonus points, my mental health condition will also remind me that if I just try hard enough, if I just do more things, I will prove that I’m coping Just Fine and everyone will love me and why would anyone want to talk to someone who isn’t doing all this extra stuff and if I just could cope the way everyone else did I wouldn’t have these problems and I would just be good enough and not have to do all these things and– stop.

It’s a fun game my brain chemistry plays with me and part of the reason it’s so successful is because of how mental health conditions are portrayed in popular culture.

I don’t talk about how my brain is working this week (this month, this semester) because I’m afraid. I’ve already experienced backlash related to my mental health condition online, and I fear “coming out” to my professors, my classmates, or the people on any of the six committees I’m on this semester because suddenly I’ll be weak. I’ll be the scary girl who might snap. Maybe they’ll ask about my experiences being detained by hospital authorities for “my own good”. Maybe they’ll start to doubt the validity of my research, or dismiss my opinions, or stop telling me about meetings, or start talking about me behind my back, whispering and then they’ll be making fun of me all the time and it will be just like high school and I am not sure I can cope with that again and I don’t want to go to the hospital and I don’t want to go to the doctor and tell them I’m not coping because they’ll lock me away and– stop.

It took me a decade of this constant self-talk before someone told me it wasn’t “normal”, and that I could get help to deal with it. And despite having gotten effective help in the past, despite increasingly being able to keep myself focused and on task and not falling apart all over the place, I’m still deathly afraid of talking to people about mental health concerns. I’m still afraid, today, right now, to go to my doctor’s appointment because doesn’t everyone have their heart pounding in their ears during class? Isn’t everyone convinced their profs all hate them? Doesn’t everyone think that if they just stretch themselves a little thinner, they’ll be good enough?

The only reason I resisted getting help for so long, when I could have been getting help as soon as I started having these symptoms, was because Mental Illness has a huge social stigma attached to it. People like me, who “just” have such bad self-talk that they harm themselves in ways that aren’t easily noticed (six committees? plus the writing for the paper? Plus the FWD/Forward blog duties? Not to mention trying to finish the MA in a year? With a husband who’s recovering from cancer surgery and has a disability? And trying to make sure everyone eats healthy, and trying to keep the housework up? Self, what are you doing? Besides doing it all wrong, of course.) can end up not seeking help because I’m not crazy, I’m just stupid and lazy. We’re lead to believe “real” mental health conditions are like t.v. version of schizophrenia and movie versions of OCD.

I had a great ending planned to this, that would invite people to talk about how pop cultural portrayals of mental health concerns affected them. I also wanted to write about how I don’t want to put a stigma on schizophrenia and OCD, but on the way these conditions are portrayed in the media, but if I keep writing, it’s going to be another way to not go to the doctor and get a needed prescription for anti-anxiety medication. Last year I didn’t go to the doctor until I thought I was having a heart attack and could barely breath.

But it’s all in my head, right? People like me, we’re just weak.

No, Actually, “Eat a Sandwich” is Not “Feminist Activism”…

…and I’m going to tell you why.

Because the policing of women’s bodies, whether you are being cheeky, or saying it to a plastic doll, is not cool. It’s hurtful and not useful, and has no place in feminist discourse. Can we move past that point? Huh? That’s a pretty Kindy thing, IMNSFHO.

‘Kay.

Moving on.

*The rest of this post is going to use some harsh language that describes my experiences/anger/frustration with Anorexia and Bulimia. I am direct and vulgar and sometimes a little flippant with how I describe my past behavior, and that is how I survived it. This may be triggering to some people. I also swear. A lot.*

There is a point when you are struggling* with an eating disorder that you might find yourself thin. Perhaps painfully thin. Maybe dangerously thin. You know this. You are aware. You haven’t avoided solids for this long, or barfed up all of that dinner you were pretending to enjoy without realizing what this means to your body. You might have some misunderstandings about what your body is actually needing…but you pretty much know.

In fact, everyone knows. All anyone can fucking talk about is how good you look now that you are so skinny…but wait…you just passed so good and have moved into too skinny…(because there is never good enough…too fat or too thin you will never be in)

Seriously, girl, eat a damned burger.

Or a bacon sandwich.

Eat something.

Because, you know, it’s that easy.

In fact (shifting voices), the only thing that anyone said to me that wasn’t so fucking insulting that I didn’t want to scream was “I am not going to insult you by saying how much harm you are doing to yourself because you are a smart girl and I know you know, when you are ready, I’ll be here”.

I watched all the shockudrama’s that were meant to scare me because ZOMG my STOMACH could RUPTURE and I was DOING THIS to MYSELF!

*for shame*

I saw Tracy Gold and the mom from Family Ties and countless others on the after school specials during school and I fucking knew.

How could I not? I knew what the result was…that was the damned point.

And I knew I was sick.

I. Didn’t. Care.

And that was scarier than anything…that I felt helpless inside my own body to stop it.

Eat a fucking sandwich.

As if I wouldn’t just throw it back up.

As if that bottle of ipecac wasn’t in my glove box.

As if I wasn’t really good at tearing it into pieces to make you think I was actually eating it only to drop some and crumble some and throw the rest away…

No, I wasn’t embarrassed of letting you hear me pee…the water running was a cover for something else…

Eat a fucking sandwich.

Tumbling around inside my head…as if it never occurred to me to do.

As if I had the power to just eat that fucking sandwich.

The hurt and the denial and the lies…and shit yelling at me just didn’t help…

Because who the fuck carries sugar packets in their purse?

And do you know when that shit started?

When I was a teenager.

We shouldn’t infantilize teenagers by saying “b-b-but they don’t get that this message isn’t aimed at real people”.

Bullshit.

Teenagers are people…with feelings…

And if anyone can tell you about what it feels like to hurt because you sit outside the socially accepted norm of appearance, it is another teenager…

being told to just eat a sandwich isn’t that funny if you are dealing with body issues

and burning yourself with a curling iron because you don’t know what else to do…

Eat. A. Damn. Sandwich.

It’s not funny or witty or clever or great new empowering activism.

It’s awful.

It’s hurtful.

It’s waking up in your own bile.

And it is possibly terrifying the hell out of someone.

Unpack that one.

*I don’t like to use “struggle” any longer when discussing disability. My experience with EDs was a struggle. There is no other word in my vocabulary, which spans a few languages, to explain it. I struggled, fought, and am still not sure I have won this one.

Guest Post: Puppies and Pills Part 1

About thetroubleis: Thetroubleis is a 19 year old with bipolar disorder, social anxiety disorder, generalized anxiety disorder and dyspraxia. She’s a WOC who is also a transracial adoptee and pansexual/queer, depending on how she’s feeling that day. She enjoys knitting, video games and is a music geek.

How I came to path of getting a service dog* was a long, strange journey. My experiences are my own and by no means represent the entire service dog community. My country and state laws are most likely different from some readers as well, so I’m only writing from my own perspective.

I’ve been bipolar since I was child along with my other disabilities, so I don’t remember being normal. I’ve always just been me. I am my normal. Although my other illnesses were diagnosed latter, looking back i can see how they impacted my child and now, how they affect my adulthood.

In junior year of high school, I was reading up on dog training, because I thought that might be something I’d want to do as a job. I’ve always like dogs, they don’t judge me and my Samoyed Kesha loved me unconditionally. One day I came across the topic of service dogs and was so amazed by them. I put the thought of them away in my mind until I read across the concept of psychiatric servicee dogs.

At first, I was skeptical. How could I dog help someone like me? I thought that service dogs were only for people with “real” disabilities. My mental illness wasn’t disabling, was it? Just because I couldn’t go out in public alone or deal with crowds didn’t mean I was disabled. Loud noises and lighting hurting and causing melt down was just part of who I was. It took me some time to to come around to the idea.

When I realized all the way in which I dog could help me, I read and read. Anything with even a small mention of service dogs was worth reading to me. I came up with a list of tasks based on my symtoms and things a dog could do the help them. I was ready.

Sadly, service dogs, especially types that are very new are expense. Psychiatric service dog are pretty new on the scene and the one program I had found in my state that trained them had closed. I was crushed. I tried to brush it off, because I didn’t have the money for a dog anyway. That was about to change.

I headed off to my first year of college and did badly after being cut off from my medication for a time, along with personal problems. I was called back home several times, because my parents had decided to sue my former high school for discriminating against me. They choose to settle.

My money problems were solved! Now where was I going to get a dog? I know it was best to buy from a breeder with service dog lines because even though some shelter and rescue dogs work out as service dogs, the chances of them washing out is much higher. I knew I’d have a hard time with my dog washing out, so I wanted to lower that chance as much as possible.

I started hanging out on Dogster.com and met a psychiatric service dog handler named Veronica who shared a disability with me. She was using a pit bull Weimriner mix as a service dog, but the dog was getting older and had to retire. She had picked a Standard Poodle to train as her next service dog and although I wasn’t partial to the breed, I went and checked out the breeder.

He was so nice. His wife friend were both service dog users, so he knew so much. We talked about what I was looking for in a dog and what tasks I wanted done. He said he thought I’d be a great home for one of his puppies and I put down a deposit and waited.

Sadly, with my puppy being in California and me and Maine, it was hard to coordinate a proper short flight for the puppy. He was already going to keep Figaro for a few extra weeks to get him used to the crate, but I ended up not meeting my dear boy until he was 4 months old. We ended up driving all the way to Boston to get him, but it was the best, safest flight for him, so I didn’t mind.

I had to finish up at school before we could commence training, so he went home with my parents, three hours away. When I finally came home, he took right to me. He’s was lovely boy, very intent on pleasing me. Teaching him was pretty easy, even for a novice like me.

I found another service dog school, one that helped owners train their own dogs. We signed right up. They have been an invaluable resource and i couldn’t to all I have without them.

Figaro and I were a team, the very best of friends. I spent that summer just bonding with him and the best thing happened. He started to alert to my panic attacks before they went full blown. I had been hoping he would, but hadn’t expected it. When I realized what was going on, I was ecstatic. He had his other tasks to make him a service dog, but this, the alerting was so helpful. My bipolar disorder is extremely rapid cycling and he started to alert me to that, as well as hair plucking. I hadn’t fully realized what a smart dog he was.

This partnership was the best thing I have ever done for me. I still take my pills and still go to see my doctors, but having a service dog in training is a big help. Although Figaro meets the legal definition of service dog, I only call him such in legal situations because his public access behavior isn’t where I would like it right now. Thus, he isn’t with me in public unless it’s a training exercise. That’s okay though, because I stay home for the most part. It’s nice and I have to admit having something need me is pretty great too. It’s good to not fail at something, to have purpose.

Next time, I’ll be writing about the public and service dog community.

* I’m using the United States of America’s of service dog and the state of Maine’s definition of service dog in this post. The USA’s definition is as follows:

“Service animal means any guide dog, signal dog, or other animal individually trained to do work or perform tasks for the benefit of an individual with a disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals with impaired hearing to intruders or sounds, providing minimal protection or rescue work, pulling a wheelchair, or fetching dropped items.”

The state of Maine’s definition is

“Service animal” means:
A. Any animal that has been determined necessary to mitigate the effects of a physical or mental disability by a physician, psychologist, physician’s assistant, nurse practitioner or licensed social worker; or
B. Any animal individually trained to do work or perform tasks for the benefit of an individual with a physical or mental disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals who are deaf or hard of hearing to intruders or sounds, providing reasonable protection or rescue work, pulling a wheelchair or fetching dropped items.

Disability 101: What is Able-Bodied or Abled Privilege?

What is able-bodied or abled privilege?

The term able-bodied/abled privilege refers to the numerous benefits—-some hidden, many not—-that many societies and cultures accord to able-bodied and/or abled people. Despite many folks’ paying lip service to notions of equality for PWDs, the chronically ill, people with psychiatric conditions, and those with chronic health conditions, abled privilege still exists, and there are still a lot of people who are resistant to the idea of a truly equitable, accessible society. Able-bodied and abled privilege is often hard for non-disabled people to spot; yet, in the words of the famous Palmolive dish soap ad, [YouTube link] most of us are “soaking in it.”

Many cultures have social expectations, structures, cultural mores, and institutions that are set up to accommodate able-bodied and/or abled people with the most ease; this is, of course, problematic for those who do not fit the standard of “able-bodied,” or “fully able,” whether in whole or part. Able-bodied or abled privilege also encompasses things like not having to worry about one’s energy level and/or pain level on any given day, the possible negative reactions of others to one’s needs due to his/her/zie’s disability or chronic condition, being stared at or questioned about (with varying degrees of invasiveness) his/her/zie’s disability or condition by strangers, her/his/zie’s ability to move for long distances or on a variety of surfaces without inconvenience/discomfort/pain and at a pace considered “appropriate” by others, being able to make decisions about the course of one’s medical, psychiatric, or other type of treatment without being questioned by others as to whether he/she/zie is making “the right choice” or can make a “rational” decision about his/her/zie’s own treatment-related choices, or being ignored by able-bodied people when one needs assistance in public; these kinds of able privilege masquerade as “the norm” for those without disabilities. For more examples, see Rio’s update on Peggy McIntosh’s famous article “White Privilege: Unpacking the Invisible Knapsack” [link goes to Amptoons].

An earlier version of this post was originally posted at Faces of Fibro on May 6, 2009.

Guest Post: Learning to Write About Disability

Mouthyb is an MFA student, majoring in nonfiction. She teaches first year students writing and second year students creative writing. In February of 2010, she will apply to PhD programs to study the effect of class discrimination in the college classroom. She is too excited to spit at the thought of a longitudinal study of the ways poor students are sloughed from the academy, so that she can put together a series of pedagogical suggestions. Someday, mouthyb plans to put together an entire department designed to study the intersectionalities of class, but she will never leave the classroom if she can help it because that’s where the good stuff happens.

This is my first post for FWD, although I occasionally hang out at Shakesville and other feminist blogs. When I received an email invitation to write for this blog, I sat down to plan out a set of entries on the sexualization of disabled and poor women’s bodies and promptly discovered something new to me. I’ve spent the last four years writing about child abuse, domestic violence, about being a sex worker, being queer and poly, about class and academia. I’ve turned those pieces in to workshop and sat through hostile and cruel critiques, and gone back and done it again because I honestly believe that these stories need to be told.

But writing about my own disabilities is scarier for me than any coming out I’ve done before because of the way disability is viewed. I went through 5 drafts in 3 days and kept banging my head against the walls. Which told me that this is what I needed to write first.

When I mention CPTSD, my disability, I get cast by the people around me in ways I find frightening. Even people I would otherwise think of as nice people, people who I work with daily, who have had a chance to see me working productively, seem to draw back from me—as if my disability makes me so different that they can have little in common with me. I become suspicious, because the way we are cast in society means that we are viewed as defective. I am viewed as unable to distinguish reality because my problem is mental. And therefore I am capable of anything.

And capable of nothing.

That’s what scares me the most about talking about disability. It’s being reduced to someone who is so broken that they are capable of nothing. And that’s exactly why I mean to talk about it. Because, like the other stories I write, talking about disability is a way to reclaim that agency. To demand and demonstrate that my disability does not mean that I am reduced to damage.

Getting Through College with a Mental Disability

We’ve been talking a lot about how university faculty and staff individually respond to students with disabilities, as well as attitudes from universities as a whole towards identifying students with potential mental health problems. I’ve noticed a lot of stories in the comments on those posts about the struggles individual readers had when navigating the university system, so wanted to share my own story and my perspectives about what made it possible for me to get through and graduate from university despite the onset of my bipolar during my freshman year. I can tell you in two words what made the difference for me: class privilege. I believe that without the money and other associated trappings of upper-middle class status I got from my parents, I would not have finished school and likely would have become homeless and unable to access meaningful mental health care. Which in turn would have certainly resulted in my death by suicide. I think it’s important to look at how and why class made such a significant difference in my experience those years, to identify policies and mechanisms that need to be adapted so that all students, regardless of class status, have the opportunity to finish their educations.

Although I had experienced some relatively mild depression during my senior year of high school, it wasn’t until my freshman year of college that I started to experience significant symptoms. I had moved thousands of miles from home to go to school in a city where I had no friends or family. The only person I knew on campus was my high school boyfriend, who I was still dating at the time. Things started going downhill for me:  I started staying in bed more often, sometimes for entire days, I stopped going to class,  but most often, I thought of death. I had an almost endless range of plans and procedures that I didn’t carry out because all of them seemed to require too much effort. I discovered self-harm, which I thought I’d invented. And I was terrified at how easy it seemed to be to get potential weapons, to cause myself harm.

At that point, I went to the student counseling center. When the day of my appointment finally came, the woman, a master’s student, took out a set of Native American tarot cards. I still remember how shocked I was.  I got up and left, demanded a new counselor, and came back a few weeks later for my return appointment – again with a master’s student, who wanted only to talk about my parents. I have some pretty obvious sources of psychological trauma – past sexual assault, then-current psychological abuse from my boyfriend – and my parents are not one of them. At least that student could hear how seriously dangerous my current depression was and gave me some samples of anti-depressants to take. Those pills triggered my undiagnosed mania and sent me into a two-day spin of increasing self-harm and lying to people in the dorm to get ahold of knives or razors or anything with a blade, culminating in a psychotic break when I tried to jump out the 3rd story window of my friend’s dorm room because I knew I could fly and wanted to test it out.

That landed me in the psych unit of the nearby community hospital. The hospitalization g0t my meds straight and got me on a mood stabilizer and got me set up with some tranquilizers for breakthrough hypomania or anxiety, so I was much more stable than I had been on the meds prescribed to me by the university health center. But a week after I was released, my roommate and best friend was hospitalized after a suicide attempt and sitting in the waiting room with her to be admitted triggered me badly enough that a few days later I self-admitted because I was scared of doing myself serious self-harm. And that’s when things went seriously sour with the university.

The university did not want me to return to the dorms after leaving the hospital, ostensibly because my behavior might frighten, upset, or otherwise disturb other dorm residents. The RA had also reported scabs on my arms (from self-harm) as suspected heroin use, so I had to disclose my self-harm to dispell that. (Although I’m not sure which would have been preferable from the university’s standpoint). If I’d been expelled from the dorm system at that point, I would have had to drop out of school as there was absolutely no way I was able to maintain an independent residence. Alternately, I could have couch-surfed.

So my parents threatened to sue the university for discrimination on the basis of mental disability. This required a whole lot of privilege – comfort with the judicial system, awareness of civil rights protections, financial ability to hire an attorney, willingness to disagree with the authority of the university. And although they hired an attorney and paid a fat retainer, the university caved before they actually had to file a suit. They agreed that I could return to the dorm system, but moved me to a new dorm across campus where I knew nobody and my roommate had had a double room to herself and greatly resented my arrival.

After I returned to school, my parents chose to pay for my ongoing mental health care out of pocket so I didn’t have to rely on the student counseling service for treatment. They paid for a private psychiatrist and a therapist who I saw twice a week – at what must have been astronomical cost to them. I know they are still involved in some collections disputes with the hospital, some 15 years after my hospitalization.

That’s a lot of personal story, but I think there are some really important points to examine. First, at no time during any of this was I ever in academic trouble nor did I need or request any academic accommodations (part of my problem was defining myself as someone who did well in school so I didn’t allow myself to waver academically, including being released from the hospital in the morning and taking a final that afternoon). Discussions about accommodating students often (reasonably) focus on academic accommodations, and I think there’s an assumption that any student having significant problems would be identified through the academic context before they needed housing or other accommodations. I am still not aware of how or if the office of students with disabilities would handle this kind of issue or whether they advocate on the student’s behalf. But accommodations in dorm life are just as crucial for students with disabilities as academic accommodations, especially when they live on campus and have no other real alternatives.

I often the housing concerns framed as a concern for other students – being around someone with a significant mental illness might traumatize them. And I agree that finding me dead in a bathroom would have traumatized someone. But my self-harm and my mania did not seem to me to be any more potentially traumatizing for other students than my dormmates who would go to the communal bathroom to throw up after every meal, those who were using hard drugs like cocaine, or even those who would binge drink until passing out naked on the stairway, none of whom ever suffered any potential housing consequences. To say nothing of my then-boyfriend, who was then causing me active and ongoing psychological trauma through his emotional abuse and who got to stay in the dorm with all our mutual friends after I was shipped across campus. That I was the only student looked at by the university and potentially subject to penalties – and identified as potentially problematic because I sought lifesaving and appropriate care – speaks volumes about how students with mental disabilities are seen by administrators.

My second point of contention is the degree to which the university actively contributed to my mental health problems before penalizing me for them. The manic episode which triggered my initial hospitalization was a direct result of the anti-depressants they prescribed for me. And I wouldn’t have been such a disaster and in need of immediate and emergency medication if my treatment hadn’t been delayed by over a month because of the first unhelpful counselor. Despite this, their only proposed solution was to get rid of me entirely – which seems to provide a disincentive for the school to provide effective counseling services. If the school pushes students into crisis, it can then remove them from school and campus. So why try to effectively treat someone?

The final point is the one I started with – it was solely due to my class privilege and the unwavering support of my privileged parents that I was able to fight the university to remain in the dorms and finish school. It was also due to them that I could access meaningful mental health care and treatment that allowed me to keep going in school. And it is stupid as hell that my luck in being born into such privilege was the determining factor in whether I moved forward or dropped out. Unfortunately, until the overall approach of universities towards dealing with students like me is drastically overhauled – to see us not as a threat to other students but a valuable part of the student community, to support us rather than trying to eliminate us out of fear – privilege is going to continue to be one of the most relevant factors.

I’m still thinking about how to best move forward on these issues. I have not done a great job of following up with my own university, primarily because I never want to speak to or be involved with them in any way ever again. But it seems like these issues must affect a sizable number of college students and contribute to the systemic problems that make it more difficult for people with mental disabilities to obtain higher education. I remember my time in college as a terrifying and desperate effort not to get kicked out – surely we can do better for the next generation of students.

A Patient’s Guide to Lithium

I’ve been thinking lately about the blurred and perhaps ultimately nonexistent line between physical and mental disabilities. And how difficult it can be from the outside to understand why a certain accommodation is needed or a person could require physical accommodations for mental disabilities. And how sometimes the things that help me manage my disability can be really annoying and burdensome. And hey, I can illustrate all of those points by talking about one of my prescriptions – lithium. So please read along with this not at all official, comprehensive, or professional review of the medication!

Drug Description

Lithium is used primarily in the treatment of bipolar disorder and while it’s called a mood stabilizer, it’s more effective at controlling mania than it is depression. It’s not sufficient to control my depression, so I take some other stuff as well. I think it’s controlling my mania in that I haven’t been manic in at least 4 years or so.

Lithium carbonate is the actual compound used in the pills I take – the chemical element lithium with some carbons stuck on it, making it a salt. Lithium is pretty cool – it’s thought to have been created in the Big Bang, it’s the lightest metal and has kinds of industrial uses, including heat-resistant glass and ceramics, and it’s in batteries! It’s produced mainly in Chile and Argentina. It is also quite pretty and shiny. It was likely used as a treatment for mania beginning in the late 1800’s, but it was when Australian psychiatrist John Cade documented its effects in 1949 that usage became widespread. It was approved by the US Food & Drug Administration in 1970.

Indications and Dosage

Well, the main indication that it might be a drug for me was my wild and uncontrolled mania. I’d started on antidepressants to address my very serious depression, only to skyrocket into terrifying mania, put myself at immense risk, and end up hospitalized. At which point I was extremely interested in finding something that would prevent that from ever happening again. One would hope that doctors might be able to figure out an indication a bit earlier in the process, but hey.

Dosage has been 3 pills every day. I’ve taken thousands and thousands of them.

Clinical Pharmacology

I’m not a doctor, chemist, or pharmacist, so I’m not going to try to talk about what the drug may or may not be doing to this or that neurotransmitter or neuron reuptake process. Especially since most sources say, basically, “It is not really known how lithium works.” If you’re a pharma nerd like some people I know, you may enjoy reading some alternate theories of the effect of lithium on the brain – here’s a good place to start.

Side Effects

“Fine hand tremor, polyuria, and mild thirst may occur during initial therapy for the acute manic phase, and may persist throughout treatment. Transient and mild nausea and general discomfort may also appear during the first few days of lithium administration.”

My hands hardly shake at all anymore, but there were years where they would tremble almost all the time. I had a very hard time with fine motor skills like handwriting (or putting on eyeliner – yikes). My polyuria (lots of peeing!) is directly related to my mild thirst – it’s very rare to see me without a beverage. I make sure I have lots of liquids in the car, I smuggle something into the movie theater because I can’t go that long without drinking something. These all have or continue to require accommodation – my hand tremor meant I couldn’t take exams by hand and my signature would sometimes look a little different (which was really fun to try to explain to the bank). I have to pay the exorbitant prices for bottled water in airport terminals so I have enough to drink on planes. When going to court for work, I have had vigorous discussions with the sheriffs manning the metal detectors at courthouse doors about whether I’m allowed to bring my water bottle inside (conclusion: plastic bottles ok, aluminum reusable bottle not ok, average delay created by water bottle issue is 10 minutes every time I go to court). It is of course not at all obvious how these accommodation needs are associated with my underlying mental disability, which makes people doubt whether I “really need” these accommodations and why I could possibly have muscle issues when I have a mental illness.

“Muscle hyperirritability (including twitching), stupor, nausea, indigestion, drying and thinning of hair, psoriasis.”

I do have muscle twitches, especially my left eyelid. I do need at least 9 hours of sleep a night, but that could be my other meds or my depression rather than a side effect. Nausea and indigestions persist, but nothing as bad as when I first went on the meds and had to get up to take them exactly on time and sit out in the dorm hall at 6am eating a bowl of cereal so I would neither wake up my roommate or throw up my pills. My hair and scalp are definitely affected – I have dry flaking skin on my scalp and, in a recent development, along my eyebrows! Yay! I haven’t yet needed accommodations from work to get sufficient sleep, but often times find myself explaining to friends that while I really would like to go to such and such event on a weeknight, I have to be home and in bed by 10pm, non-negotiably. This leads them to think of me as not very fun and a bit of a fuddy duddy.

“Weight gain”

There’s definitely a significant correlation between lithium and weight gain. Blah.

Warnings and Precautions

It turns out that the therapeutic level of lithium is pretty close to the toxic level of lithium and the amount of the drug in the bloodstream has to be carefully regulated. Because lithium carbonate is a salt, it can build up in the kidneys, which means that my water and salt intake also make a difference to my lithium levels. So the drugs come with a warning to “avoid becoming overheated or dehydrated during exercise and in hot weather” and to be careful about consuming not enough or too much liquid. Once after walking up a long hill on a hot sunny day, I could feel that I’d sweat too much and was very dizzy and confused from the concentration of the drug in my system and since then have been much more careful.

Taking a dose that is so close to being toxic also means that I periodically have my blood tested to measure the levels. It’s a bit of a hassle, as it has to be done first thing in the morning without having eaten and it’s in the opposite direction from work and the parking garage there is a nightmare. And I don’t love getting stuck with a needle, though I’ve found I can avoid getting lightheaded if I just don’t look at the blood coming out. The worst part for me is the bruise I get – I bruise easily so even a clean stick leaves the inside of my elbow blue and purple. And no, jokes about how I look like a heroin user are not funny, and yes, trying to cover it up when I go to court or meet with a client can be quite a hassle. (Especially as I have a history of self-harm and thus a history of trying to cover up my arms to avoid comments, this is also a bit of a trigger for me.)

Usage in Pregnancy or Nursing

Lithium is in the US FDA Pregnancy Category D, meaning “There is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience or studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.” NAMI has a very good discussion of risks and considerations during pregnancy, including a recognition that for some women, it’s not an option to stop taking it. It does pass into breast milk and can be transferred to an infant.

I think about this a lot. Even if I weren’t worried about the risks of passing on my bipolar disorder to my child, I do not think that going off lithium for any period of time would be safe for me. While it’s possible to stay on it during pregnancy, it does create risks and is certainly a far cry from friends of mine who are eating only hand-prepared food during their pregnancies to avoid preservatives and chemical additives.

Summary

Except for a brief flirtation with Depakote years and years ago, me and lithium have been hot and heavy since the way back. And because I expect us to be together forever, I see these side effects and potential toxicity as realities that I have to accept into my life and accommodate as best I can rather than things I could choose to be without. And I’d likely put up with a whole lot more than this before I considered breaking up. I just wish people could understand us better and help me get what I need – water, blood tests, tolerance for wonky handwriting – so our relationship can work.

Fort Hood Shootings

As you may have heard, this afternoon at Fort Hood in Texas, a shooter killed 12 and wounded 31 people. The shooter, Army Maj. Nidal Malik Hasan, was killed during the incident.

While this is not a breaking news blog, my initial reaction was fear that the shooter had or could be construed to have had a mental disability that would be seen as the basis of the attack. And because emotions run high after this kind of disaster and people feel protective, there can be some nasty and hurtful rhetoric flying around. (I have already seen some vile and awful things said about his potential Muslim heritage. Needless to say, none of that will be tolerated in comments.) We wanted to create this as an open thread, safe space kind of area to discuss any concerns or thoughts raised by this incident.

Here’s a few resources I’ve seen, more will undoubtedly develop as the story progresses:

  • If you are concerned about specific individuals in the area, check the Red Cross Safe and Well List for more information.
  • Local blood donations are being accepted at Scott and White Memorial Hospital, 2401 S 31st St, Temple, TX?. They will be open until 10pm local time today and re-open at 8am tomorrow. ETA: The hospital has closed to donations for the day due to overwhelming response – please try them again tomorrow.
  • To find other locations to give blood, check the Red Cross website. Even if you live nowhere near Texas, consider donating blood (if it is healthy for you to do so) to prepare for future disasters.

Our warm thoughts and hope for speedy recovery go out to those affected by the shooting and their friends and families.