Wednesday, July 29, 2009

Breaking news

I've been prevented from writing for a few days due to illness and travel. In that time, I experienced something I've heard about, but never encountered first-hand in the land of mental health treatment. I've had therapists that will give you false hope, that will continue treatment that is going no where with you for years but never one who simply gives up. Maybe that's because this is the first therapist I've seen while on Medicaid, so they have no money to lose, or maybe I'm just being cynical. If you asked her, my therapist would tell you I'm wrong, that she has no intention of giving up on me. I don't care what words she thinks would be appropriate, that's what happened.
Up til now, our therapy sessions have consisted of this woman trying to sell me on the benefits of giving up being angry and sad. This is really like watching a commercial for the show you're currently watching. I wanted to scream "I'm HERE, Lady! I'm in the building, I'm AT THERAPY! I've already reached the conclusion that what I'm doing is not working or I'd be on line to see the Mighty Boosh right now." But I didn't do that. Instead I asked her how; how do I give up negative emotions? What do I actually do? What skills can I practice? Because as most people who've been in love would know I think, you can't just will yourself not to feel. I mean, the harder you try not to think about a pink hippopotamus, the more pink hippos become your internal screen saver. And yet that was her only suggestion. "You just have to try, Joanna." Ignoring the fact that this completely invalidated eight years of very hard work, of poisoning myself with medications, of answering absurd questions, of sharing every detail about myself with complete strangers, I simply told her that I was trying. The bitch told me to try harder. Try what? I asked, Tell me what to do, and I'll do it! She had no specific ideas for me. She just continued to tell me to try. I asked what she thought I was doing, if I wasn't trying. She suggested that maybe I was malingering, or seeking attention. After all, she said, that's what she had done when she had been depressed.
And just like that, I came up against what I believe to be the most common problem with mental health professionals. They think they fucking know. Either because of personal experience with mental illness or because of their education, they think they know what's going on with you, sometimes just from reading your chart, before they even talk to you. You have a very small window of time before they decide who you are, and what your problem is and then stop hearing you. In my case, this therapist had had experience with depression, and alcoholism in her family and decided based on these similarities that I was a "mini-her", and that since she had enjoyed the attention it got her, that must be what was going on with me. She stopped trying to help me, and started trying to help her idea of me, someone who doesn't really exist. And since I'm the crazy one, she'll never have a reason to consider that maybe her opinion needs revising because everything I say is suspect. I watched it happen. And there's not a damn thing I can do about it.

Thursday, July 16, 2009

The myth of the big guns (Part 3)

So, I had decided to try and make the best out of a very troubling situation. At crack o' dawn on Monday morning some poor lab vampire came up and drew my blood for the lithium level. And I met with Dr. Rao for about ten minutes every day so she could assess my progress. At least, I believed she was assessing my progress. I found out differently on Wednesday. I asked, during our meeting if she planned to discharge me that day as she had suggested was possible a few days ago. She replied that my lithium level was too low. Not that she believed me to be a danger to myself or anyone else for that matter. Not that anything she had "assessed" lead her to think I might be unable to function outside. Just that a certain salt in my blood did not meet certain standardized parameters. I wondered what the point of our meetings had been if that was going to be the deciding factor in whether or not I was going home. Or, for that matter, what had been the point of her going to medical school. Hell, I wasn't even a nurse yet and I could read blood test results. One of the first things they teach you as a nurse is to look at the person, not the machines. If the heart monitor says V-tach and the patient is drinking coffee and complaining about the T.V. reception, you do not approach them with defibrillator paddles, you realize that they were moving around and the monitor was screwy. Apparently, they don't share this little hypothetical with soon-to-be doctors. Dr. Rao then added as sort of an after thought that certain staff members had also shared with her that they believed me to be "still emotionally unstable". Funny thing, that, because I had behaved spectacularly on the unit. And when I later asked the nurses and aids their opinion on my stability they told me that I seemed stable enough to them. One even went so far as to roll her eyes and say "Doctors sometimes say things like that." So unless housekeeping had had a heart to heart with Dr. Rao regarding my sanity, she had lied. That wasn't her only lie either. My mother requested a meeting with her to discuss why I was still at the hospital and when she thought I might be able to leave. Dr. Raos' answer was "It takes a week at least to stabilize a patient." Aside from being completely arbitrary and inconsiderate of individual needs, this minimum of Dr. Rao's revealed her "maybe wednesday" statement to be complete bullshit. So now I wasn't just being held against my will, I was being held against my will by someone I couldn't trust. And the real kicker was that this woman's master plan consisted of doing exactly the same thing as was being done on the outside. Her single goal was to get my lithim levels up. That was it. No big guns. Except maybe electro convulsive therapy and I didn't meet the criteria for that. The cherry on top of this marvelous sunday was that about a week into my treatment Dr. Rao left the country. She just went back to India. And she wasn't gonna tell me either. I asked her about it after overhearing her talking with staff. So I was still locked up, and the doctor in charge of letting me out was in another time zone. Now what the fuck was I supposed to do?

The myth of the big guns (Part 2)

It's kind of counter-intuitive to think of people getting sicker in a hospital. But it happens every day. People who come in for surgeries wind up with pneumonia, people who come in with pneumonia get bed sores. And, if my experience is any indication, people who come in with psychological problems just keep accumulating more psychological problems. I arrived on Krembs-3, the less acute psych unit at Binghamton General Hospital escorted by two people wearing badges that read "volunteer". Why anyone would volunteer to ride elevators with crying people at the crack of dawn was and still is beyond me. I was quite distraught, as may be imagined. On top of how I had been feeling before I came to the ER, I was feeling totally powerless and helpless in the face of my surprise admission, and my nerves were frayed from two hours of being badgered by Jen, and I hadn't slept in the past twenty-four hours. In addition, I was wondering at the back of my mind what the hell I was going to tell my professors if I was still stuck here come Monday. I was, I hope understandably, having some difficulty maintaining my composure. I wept through my tour of the unit and my intake interview with the nurse. "I don't understand." I kept saying, "I haven't seen a doctor." At last, my psychiatrist appeared on the unit. She was a tiny woman from India called Dr. Rao. The first thing she did after introducing herself was offer me drugs. No, I would not like some ativan, thank you, I would like to discuss your reasons for admitting me. Yes, I understand that I seem upset, but I am upset for a legitimate reason and that isn't what Ativan is for. No, I would not like some vistaril either. Keep in mind that when I say I was upset, it wasn't like I had thrown a chair. I wasn't even yelling. I was just crying. Crying hard and messily, no doubt, but that was the extent of my "out of control behavior". Finally I agreed to take a Benadryl simply so we could move on to other things. She gave me a physical exam which consisted of a cursory listen to my heart and lungs. I expressed concern about missing my upcoming finals. She dismissed these out of hand. If she had been listening, she might have taken into consideration that people who are in imminent danger of suicide aren't generally thinking about what's going to happen next week because they don't plan on having a next week. She might have taken this as a positive sign, and dare I say, made an assessment that required some insight on her part. Instead she gave me the patent answer that I get everytime I show reluctance to drop what I'm doing in my life and do whatever I'm told: "Your mental health comes first." She told me she would do a blood test to see what my lithium levels were like and we'd go from there. "Just a few days" she had said. "I will discharge you, maybe on Wednesday." But I still felt as though I didn't need to be there. Yes, admittedly, I had thought of suicide, I had even thought of a plan. But I hadn't done anything about it. Not even close. I hadn't gone into the station and gotten a box-cutter and stood in the bathroom, poised on the edge. Instead, I had done exactly what you are "supposed" to do. I thought, (and I still think) that showed I wanted to live. And besides, I had support outside. I had people that I could count on not to leave me alone. I said so. She said that I was clearly emotionally unstable, why, look at me, I practically couldn't speak for crying. But you can't say that you admitted me because I'm hysterical when I'm hysterical because you admitted me. Or at least, I thought you couldn't. Apparently, you can. In any case, I realized I was going to have to suck it up, and fast, if I wanted to go home. So, I went to groups, I took the meds they gave me. I requested Benadryl when I was homesick or angry at my situation because I didn't want them to have any reason to question my judgement (or to see me teary again). And I started to think, that second day there, that maybe this wasn't such a bad thing. So I hadn't really needed to be hospitalized, maybe it would do me good anyway. Maybe this was my chance to really get out the big guns and blast away those awful feelings. So, they're a little trigger happy with admissions, at least they'll pay attention. They'll make sure they get to the root of the problem. At least I'm in a situation where something will have to change. Yep. That's what I thought, all right.

Monday, July 13, 2009

The myth of the big guns (Part 1)

I very nearly made it through college without ending up on the wrong end of a nurse-patient relationship. Then came finals week of my first semester of senior year. We were doing a radio play very late at night when the fear and hopelessness hit me. I stepped out of the station to try and get myself under control. And as I sat on the couch in the new union basement and tried not to cry, I had to face the fact that what I was doing was not working. And I started to look ahead at life. I saw no relief. I saw this monster just regrowing head after head after head and I felt desperate. There was an unused bathroom just feet away and a drawer full of box-cutters in the radio station. It would have been very easy. But, I was a student nurse, and it had been drilled into my head that people who are feeling suicidal need to go to the ER. So, I asked my boyfriend to drive me. At the ER, I tearfully admitted to the triage nurse that I was feeling suicidal. She asked about my insurance, took my purse (although thankfully not my clothes as I've seen done in other hospitals), and brought me to a room where I waited to be evaluated.

Typically, when one goes to the emergency room, one expects sooner or later to see a doctor, or a nurse practitioner; someone who is licensed to diagnose and treat illnesses. This is apparently not the case when you are a psych patient who shows up at five in the morning on a sunday. 24 hour emergency care by a physician is not deemed necessary for you. I saw a counselor. Her name was Jen. I told her my symptoms and she seemed decidedly unimpressed. She pushed, and pushed for some sort of circumstantial reason why I was feeling this bad, but nothing I told her seemed satisfactory. The tone of her questioning was almost skeptical, as if she suspected I was somehow faking. When she asked about my previous diagnoses and I told her that they didn't really know, she became irritated. I just wanted to be out of that room and away from that woman who made me feel so insignificant and so small. After demanding for forty-five minutes that I explain myself, as though I were a misbehaving child, she asked if I wanted to be admitted. The simple answer was "of course not". Of course I did not want to locked up with limited access to my support system, no control over what and when I ate, and strangers judging my every move. No, I did not WANT to be admitted. But I didn't want to be turned away without so much as an assessment by a doctor either. I didn't no what to say. I just sobbed. She stared at me for a while and then said "Why don't we talk to the psychiatrist and see what she says?" "We", she said, as if I'd be involved. "Yes", I said, "Please, I would love to see a psychiatrist." She left the room. She was gone for a long time. I waited. I thought when the psychiatrist came in, we would talk for a few minutes and she would give me some new medication and maybe a referral for a follow up appointment and I would assure her that I would call somebody before trying to kill myself and that would be that. Only, the psychiatrist never came in. Jen returned after about a half an hour and said "We're gonna go ahead and admit you." I was confused. "What happened to the psychiatrist?" I asked. "I just spoke to her on the phone." Jen said. So I was not to see a doctor after all. "Could we, actually not admit me?" I asked, beginning to feel that this had been a very, very, bad idea. She shook her head. "We already have the order to admit you." I thought, How could that be? This doctor hadn't seen me, hadn't asked me a single question, and had just taken away my freedom. She had made her assessment (and I use the term very loosely) solely based on the opinions of someone else. It's not as if Jen had had a set of medical facts to report to the doctor, like the size and drainage from a wound which would be the same observations no matter who was making them. I know from my experience on the other side of psychiatry that all the information she gave to the doctor would have been subjective observations that might have been interpreted very differently by a medical professional with supposedly more experience and training. "That's just the way we do things", she said. And that was it. Nothing I said after that point mattered, it was just a question of whether I was going to walk up to the unit or be physically forced. So I walked.

Friday, July 10, 2009

The temptation to decompensate

As I continued to take my meds and talk to Bill with little to no effect I began to feel more and more hopeless. I also began to feel angry. I was doing everything I was supposed to be doing, I was quite literally sacrificing my body in an attempt to heal my mind (my liver has still not recovered from the drugs I've been on) and things were not getting better. And nobody seemed particularly bothered by that fact. That's when I started thinking seriously about hurting myself, both as a way to express my anger and as a potential way out. I mentioned this to a psychiatrist that I was seeing in NYC between college semesters. He took notice. Keep in mind I had never (and have still never) actually tried to end my life. At the time I had not even hurt myself (since then I have done so once). He suggested a partial hospitalization program in addition to the medication I was taking. And I applaud him for that. His name was Sander Marks and he took me seriously without panicking and overreacting. Partial, as it is called, consisted of meeting with your doctor and attending two groups daily. Unfortunately, the groups were a lot of diffuse talking about how much everyone wasn't enjoying their lives with little discernible goal. Still, it was getting me out of the house, and out of my own thoughts and that was something. I could only go for three weeks before I had to return to school but I figured at least I had a consistent place to go during breaks and summer. I was wrong. When I later tried to return I was informed that this would be impossible. That I had had my chance and it was "someone else's turn". And I became aware of another theme in mental health care, which is that if you dare to try and function like a normal human being; if you want to go away to college, or even hold down a day job you just don't need help badly enough. I was not willing to put my life on hold and sever all the relationships I had with people at school and therefore I had to resign myself to care that was way more fragmented than it had to be. I ran into the same theme again over and over with different agencies who referred me to therapy groups that were "just perfect for me" but which met smack in the middle of the work day without exception. The message I got was that if I wanted help, I had to give up everything else. Ironically it was those relationships at school, that prospect of finally being a real nurse, the hope of moving out of my mom's house and getting a permanent job that made me want help, that made me want to stay alive. I was clinging so desperately to the little I got out of life that I couldn't let it go for the possibility that something might work eventually if I just gave it unlimited time. Part of me though, began to wish I could. If I could just stop hoping, stop fighting, that part thought, maybe I could get some help. The question is, would there have been anything left to help?

Thursday, July 9, 2009

Slight tangent

So, a good friend of mine, who I met back in college was reading this blog and she thought I should share with everyone where the title came from. It happens that this friend also has some experience with the mental health care system. We've even had a few misadventures in therapy together (see the upcoming post: Give me Liberty and give me death). Anyway, to the poorly concealed astonishment of her therapists, she makes a decent living as a playwright and after a particularly rough patch in her life, she turned to a therapist called Mary Spilde (spelling?) in Binghamton, NY. Her experience with this person led her to write what I consider to be her best work on a bus between Binghamton and Newburgh. It was a ten minute play that demonstrated exactly how absurd and frustrating therapy can be and it ends with the therapist screaming at and physically shaking the patient followed by an abrupt request for money. She didn't know what to call it, and I suggested "Your Moneys Worth". When I started this blog, my intent was sort of to pick up where the play left off, albeit in a much less inventive way, showing people what really happens to many of us who put ourselves into the system and giving those who share my frustration the message that they are not alone. So I took the title of the play and made the title of my blog. If you'd like to read this piece, it's available at www.notmyshoes.net, as are some other really good plays including Like Dreaming Backwards which deals with the tragedy of suicide. A real beach read. Anyway, enjoy, and if you want, let me know what you think.

The old college try

Going back to the history of Joanna in Crazyville. So, I'm mentally ill, right? So says my lovely psychiatrist back in approximately 2001. Now you've got to understand something. I was, at this point extremely excited about becoming a nurse. All I wanted to do was get that R.N. license and go to work on a hospital floor. I wanted to be part of the system. I had the utmost faith that worked and that within its' bounds, I could be a genuine caregiver. I also looked forward to being a colleague of doctors, whom I imagined were all something like Gregory House. Assholes? Yes, but medically curious assholes who wanted to find the answer and would exhaust every possible resource investigating their patients symptoms. Me and the system were gonna make people better. So when I found out that I was ill, I became the single most compliant patient you could ever imagine. I took ALL the drugs, I kept EVERY appointment. I was completely honest about everything I felt. I didn't have that suspicion which people often bring into treatment because these people were my friends. And not only that, I might have to work with them some day.

This being the case, when I went to college, I dutifully kept up my treatment, despite the fact that up till then, my treatment had had little effect. The first week I went to the counseling center and made an appointment. I was assigned a therapist named Bill Russel and I have to hand it to this guy, he tried. His approach was psychoanalytic in nature, like Freud, Jung, and Erikson. We talked at length about my family situation, about dreams I had, about what my subconscious was trying to tell me. We came up with all kinds of reasons for my sadness and lack of self worth, and all kinds of reasons why logically they shouldn't be a problem. But we never addressed head on the fact that they were a problem and we never came up with anything to actually do about it. A year into this therapy Bill referred me to the campus psychiatrist. After telling her my life story, she prescribed Lithium and Seroquel. Again, no physical investigation, no insight as to what sort of therapy might be helpful, just drugs, and bigtimes drugs at that. Lithium is a very dangerous and uncomfortable drug to be on. It's therapeutic margin is very slim and if you're not VERY careful about your sodium intake, or you get sick and vomit,(a side effect of Lithium) you can become toxic like that. Even at "safe" levels, Lithium can damage the thyroid, kidneys,heart, and liver, all organs that you pretty much need. Seroquel is an antipsychotic. The combination of lithium and an antipsychotic pretty strongly suggests a diagnosis of bipolar disorder which this doctor insisted she believed I did not have. What did I have? She didn't yet know. She never found out either. I was given the non-diagnosis of mood disorder NOS (not otherwise specified). And since then, every doctor I've seen has taken one look at these medications and gone, "Well, someone prescribed these once for some reason, so you must be bipolar." Nevermind the fact that I've never had a manic episode, or especially impulsive behavior, or even, (especially back in college) pronounced irritability or rage. The drugs said bipolar. The symptoms became irrelevent. As to their effectiveness, at first I was so hopeful that a new approach was being tried that they seemed to work. Very quickly though, I fell back into my familiar patterns of anxiety and depression. The Lithium was increased, and I became toxic. It was reduced again and then maintained as if everything were fine. As long as I wasn't suicidal they were content to let me suffer because in their minds, I shouldnt' have been suffering, after all the lithium levels were fine so clearly the drugs were working. I spent about a year and a half like that. That's when things got really desperate

Wednesday, July 8, 2009

Language barriers and the underpants gnomes

My original intent with this blog was to describe my experience chronologically. I'm going to interrupt that flow right now, however. Last night I was in the office with my current therapist trying to find a way to cope with feelings of panic and despair that have prevented me from working for the past three days in a row. I realized two things. One: Therapists as a community are very much like the underpants gnomes of T.V.'s South Park. They seem to lay out three phases of treatment which go something like this

Phase one: Collect underpants (Tell your therapist everything)

Phase two: ... (No one seems to have quite put their finger on it)

Phase three: Profit (Feel better)

Now, I'm not saying nobody ever benefited from what is called "supportive therapy" which seems to be based on the idea that simply talking about your feelings and circumstances will help alleviate them. In fact, it may be ideal for people just beginning therapy who are struggling to understand what is happening to them, newly diagnosed people who are just wrapping their minds around their symptoms, or even as an adjunct to other therapies for people who are in long term treatment but who have little support. However it's been my experience that staying with this type of therapy exclusively does not help you to learn to manage your feelings, and change them (or at least your response to them) so that you can live an enjoyable life. It can leave you feeling stuck, ineffective, and powerless. Unfortunately, even therapists who claim to take a more cognitive approach are often way more support based then "skills based". So the patients are left with a big whole in their treatment between talking things through and feeling some relief and no practical way of breaching it.

The second thing I realized is what a large proportion of mental health professionals in this country do not speak English particularly well. I do not pretend that this makes them any less knowledgeable or empathic, or any less valuable in a country full of different languages and cultures. Indeed, for people who do not speak English, or who are bilingual, they are probably a godsend. However, I do sort of take issue with the fact that these people are often assigned the care of monolingual Americans like me. This is a profession where diagnosis and much of responsible treatment relies solely on the ability of the two parties to communicate with each other. If one cannot make herself understood to the other, treatment becomes ineffective at best and harmful at worst. And I'm not talking about an accent here. I'm talking about my actual words being not understood. I'm talking about my therapist repeating the same non-helpful phrase over and over because she does not have the words to paraphrase. Should I broaden my horizons and learn to speak Spanish, Russian, Polish, Chinese, or Hindi? Probably. Would it make me a better, more interesting and possibly more empathic person? Again, probably. Does the fact that I have not done so mean that I forfeit the right to be helped psychologically? God, I hope not.

Tuesday, July 7, 2009

It all started when...

There are a number of reasons that led me to seek help from mental health professionals. Most of these came to a head when I was sixteen, the age I used in the previous story. This was the year that my alcoholic and sexually abusive father finally walked out. That actually probably would have been a good thing, except that my mom, who has mental health issues of her own began to decompensate. She had a lot of anger and no means of expressing it and became occasionally physically violent. At around the same time I contracted mononucleosis although we wouldnt' find that out till later. Finally, my boyfriend at the time expressed that he no longer shared my feelings and essentially disappeared off the face of the earth. This was really the kicker for me. I know it seems trivial, but I never really expected much of my parents in terms of support and stability. He had been the person I'd come to rely on and unfortunately when it ended, as most high-school relationships do, I had no leg to stand on. I stopped wanting to go to school. I quit my job as a groom at Claremont Riding Academy. I cried constantly, and I slept a lot. I began to long for a way out. So, I was brought to a psychiatrist. What with the circumstances I was in, no physical causes of my malaise were even considered. No physical was done, no blood tests for hypothyroidism or vitamin deficiencies even though these are terrifically common. On the basis of a one and a half hour interview I was not referred to a therapist even though it certainly seemed that circumstances and trauma played a large role in how I was feeling. Instead, I was given drugs. First Zoloft, then Effexor, then (to go in a completely different direction) Klonopin. The mono went undiagnosed for nine months, and a child who had, undoubtedly, a lot going on in her life was labled mentally ill. When the drugs had no effect, other options were not considered. The doses were increased until the side effects were intolerable and then another drug was prescribed. At no time was the possibility that my symptoms could have been the result of anything other than disordered brain chemistry entertained. The symtoms were not investigated, they were taken at absolute face value, and no real diagnosis was put forth. I was just put on drugs. That's it.

Monday, July 6, 2009

Just to give you a feel

Imagine you are sixteen. You've just been out for a run, something you always do after school. Only this time your run has left you thirsty. Not just a little dry in the throat, but parched. Every breath burns, you begin to feel light-headed, you see spots. You reach for the water fountain, but it's out of service. Up ahead, there's a starbucks. "They've gotta have some water" you think to yourself. So you drag yourself up the block, you very patiently wait in line, and when it's finally your turn, you ask for a cup of tap water. The woman behind the counter returns your question with a smile. "Why do you want water?" she asks. "Would you say that you're feeling thirsty?" You can't help but feel that that's a silly question, but you nod. The woman shakes her head sadly. "You're so young." she says. "How did you let yourself become so dehydrated?. " You have no answer. "Surely there must be a reason?" she presses. When you still have no answer she continues to ask you very detailed and personal questions both about your thirst and everything else up to and including your sex life. Now you are thinking "This must be some water." Finally the woman walks away. She returns without water or explanation. "Are you feeling better?" she asks. You reply that you still haven't had any water. The woman furrows her brow in concern. "I think maybe you need something more than water. How about some coffee? It'll make you jittery, keep you up at night, give you headaches and make you sick to your stomach, not to mention stunt your growth and hinder your brain development, but it will quench your thirst. For now." You're desperately thirtsty, so you try the coffee. After about half an hour, your thirst is back with a vengeance. You thank the woman for the coffee but say that you really feel that you need some water. "I know just the thing" she answers and again walks away. This time she returns with a bag of normal saline solution and an I.V. needle. You see the needle and flinch. "Really I just need some water" you protest. "It's too late for water. Your thirst is out of control. You really shouldn't have let it get this far," she answers, all the while coming closer and closer with the needle. You look to the other customers for help, but none of them even meet your eyes. Other employees are blocking the door. What now?

This is the best analogy I can think of for my interaction with the mental health care system, which will be the focus of this blog. I've spent eight years as a patient, and have also dabbled as a psychiatric nurse on an inpatient unit. Hopefully, this means I will have something helpful and interesting to say on the subject. I hope you enjoy