"Desperately Self-Centered:" Requesting My Medical Records

At work recently I was informed that mental health patients are not allowed to view their medical records while they are in the hospital. As staff we are actually prohibited from allowing mental health patients to view anything in their charts, even printing off a copy of a patient's lab results for them to keep is not allowed. They may request their medical records later, after they have been discharged, but according to the nurse I discussed it with "they charge a bunch of money for it, to discourage people from looking at their medical records." (Which is actually not true, the government assigns a limit to what hospitals can charge for copies of health records). I was actually astonished to learn this, because it goes against everything that I believe and so obviously violates patient rights to be informed about their care and treatment!

In the "Guide to patient services" that every patient receives is the Minnesota patients' bill of rights and a helpful explanation about "your right to access and protect your health record." It states that:

•  "You can see your health record for information about any diagnosis, treatment, and prognosis. 
• You can ask, in writing, for a copy or summary of your health record, which must be given to you promptly. 
• You must be given a copy or summary of your health record unless it would be detrimental to your physical or mental health, or cause you to harm another.
• You cannot be charged if you request a copy of your health record to review your current care"

Apparently this hospital (and probably most others) has a blanket approach that deems that all mental health patients should be prohibited from viewing their medical record on the grounds that it would be detrimental to their mental health. In order to make any exception to this a patient would need a signed order from a doctor that they have permission to view their medical records. As far as I know, this has never happened. Patients with "physical" medical conditions are not subject to this ridiculousness. I completely reject the notion that viewing their health records would be detrimental to most mental health patients. Most patients know what is going on, they know that they are struggling with a mental illness and the contents of their medical record should thus not be surprising or upsetting to them. Denying patients right to see their medical records sends the message that the records are not important and do not need to be factual, unbiased, or complete. Allowing patients to view their records would hold staff accountable for their contents. They would need to back up their opinions with facts, observations, and science rather than making assumptions, jumping to conclusions and stereotyping as they sometimes currently do.

As a result of these findings I decided to request my own medical records from my 6 psychiatric hospitalizations. Because I have the right to, and because I was curious what sorts of things it might contain that the hospital did not want me to see. I had requested my records in the past but didn't really know what to ask for so was only given vague discharge and intake summaries. This time I requested ALL medical records, which turned out to be a mistake, because at $1.30 per page the cost of this would be about $2,500. So I amended my request to just ask for copies of all nursing, doctor, and social work progress notes. This got me what I wanted without having to pay a fortune.

When I started reading through my records I was transported back to a time when I was deeply depressed. Some of it was very sad to read and I had to remind myself that I wasn't in that place anymore, I was better now. There were details I had forgotten, such as that time that I hatched a plan to pull the tape out of some VHS's in the hospital and use them to hang myself from a sink. Overall, I was impressed by the understanding, empathy, and accuracy with which some of the doctors and nurses described my illness and state of mind, and horrified by the complete inaccuracy and lack of sensitivity that other doctors showed. There were more than a few errors. Some of the worst things written in my chart were: 
"Presents as desperately self-centered. blames others. Tried to relabel her behaviors as symptoms of illness. Patient is not invested in getting better but would rather be ill. Patient is very good at eliciting sympathy from friends and family." None of those things are true, and at first I couldn't understand why someone would write them. Given my experience in the mental health system I have concluded that many providers can't deal with treatment resistant depression. The idea that someone would continue to suffer so much through no fault of their own is just too sad, so when they encounter a patient that has suffered so much for no reason they rationalize that the patient must deserve it. They must be at fault for their illness, they must not want to get better, they must be a bad person.

The experience of perusing my own medical records taught me an important lesson as a mental health worker: Don't believe what is written in a patients chart. Get to know them yourself. Ask the patient what is going on rather than trying to find out from their medical record.  Form your own impression.

My Scars Are No Different Than Yours

Everyone has scars: from surgery, from itching too much when you had chicken pox, or from that time you scraped up your knee when you fell on the sidewalk when you were a child. Some people have scars that are the result of mental illness. I have many scars all over my body from self-injury: little scars, big scars, faint scars and deep and wide scars. The definition of stigma is "mark of shame or disgrace." For people with scars from cutting or suicide attempts their scars may serve as a scarlet letter, marking them with the sin of having had mental illness.
            The way that people with mental illness feel about their scars is as diverse as they are. Some are proud of their scars: they are battle wounds from a long and hard-fought struggle with mental illness, and they represent courage. Others see their scars as a chronicle of their history: the reminder of where they have been and where they are going. Some are indifferent about their scars: they are what they are and don't require any further thought. And some people are ashamed of their scars: they feel that their scars mark them as weak, broken, and sick.
            How you feel about a scar affects how you deal with it. Some people hide and cover their scars, others don't give them any thought, and still others proudly let the world see.
I have a scar on my forehead from accidentally falling down a flight of stairs as a child. I readily tell people that story, laughing about my childhood clumsiness and marveling at how well the 45 stitches healed.
            My scars from self-inflicted wounds while I was deeply depressed do not generate the same kind of conversation. Some people notice them and say nothing. Others ask, "What happened??" expecting me to have a story about a horrible accident or injury, and instead getting the explanation "I was depressed..." Which usually makes the asker feel awkward and immediately change the subject.
            I used to try to hide my scars, wearing pants in warm weather, applying supposed scar fading creams, and slathering foundation and makeup over them. But it just became too much of a hassle, and I didn't like the implication of hiding them. I was, in the past, ashamed and embarrassed of my scars. I thought they were ugly. But now I see them as simply leftover marks of my illness. I am not proud of my scars, but I am not ashamed of them either and I do not hide them, because I did nothing wrong. I was very depressed and did what I felt I had to do to survive. Self-injury is a very unhealthy coping skill and I was in a pretty desperate place to use it, but I was doing the best that I could at the time. Now I know healthier coping skills. And I AM proud that I have not done any self-injury for over 3 years now. Scars are just what’s left over when you’ve healed. My scars are no different than yours.

A Critique of Mental Health & Academia

Imagine that you are a member of a minority (perhaps you are). Now imagine that you take a college course which purports to teach all about your minority group. Imagine that this course is taught by someone who is not a member of your minority. Imagine that ALL of the textbooks assigned are written by people who are not a member of your minority. In fact, in this supposedly advanced course, you do not get to interact with or hear from a single person from the minority group it purports to teach about.

This is not an imaginary scenario. The “minority” I am referring to in this scenario is people with mental illness (although they are less of a minority than most people think). This is the reality of many college courses taught about mental illness. Sometimes there is one book assigned by a person with mental illness, as a sort of token effort. There is a social work saying that I love: “Nothing ABOUT me WITHOUT me.” People with mental illness need to be involved in education about mental illness.

This is not just an idea that I have, the fact that hearing from and interacting with real people who have experienced mental illness leaves students with a much better understanding of mental illness than the traditional way of hearing only from “experts” is actually backed up by research. One of the greatest benefits is decreasing stigma among students. A study by Mann and Himelein (2008) found that the “traditional, diagnosis-centered” approach to teaching an introductory psychology class did not result in any reduction of stigma among the students, whereas a “humanizing” approach did. They concluded that “intervention programs that include personal information about the individuals with mental illness, encourage discussion, and evoke empathy are more likely to succeed” (Mann & Himelein, 2008, p. 548). Corrigan (2005) explains, in his excellent book on stigma, that research shows that the most effective way to reduce stigma is through interaction with people with mental illness in a situation where they are equals, have common goals, and the interaction is sanctioned by those in authority. The interaction that professionals have with their clients with mental illness is NOT as equals, the professional is clearly in a position of power. Therefore, it is not a very effective type of interaction for reducing stigma. The classroom is the ideal place for stigma to be rooted out of young students before they embark on their careers! Interaction with people living with mental illness as guest speakers or educators in a course about mental illness provides interaction as equals, officially sanctioned by those in authority (the professor, department, or college), with the shared goal of educating students about people with mental illness. Every college course on mental illness should include some interaction with real, live people with mental illness. There are many ways this can be done: they could be a guest speaker, they could be invited to come answer student questions, or they could be included in class discussion or other activities.

There is no shortage of people with mental illness willing to participate in this type of interaction: for example, NAMI-MN offers free, trained volunteer speakers through the In Our Own Voice program. I emailed the Director of the MSW program I am in sharing this information with her and encouraging the inclusion of people with mental illness in relevant courses. Her response was “I want to re-iterate that in our MSW program you will be a student and in that role, it is our stance that your primary role is as learner.” I asked a psychology professor who has been very encouraging of my mental health advocacy work about how I could best educate psychology professors on how to teach about mental illness in a way that reduces stigma, and she suggested that I do a presentation at a Psychology Colloquia which the department regularly hosts. I emailed the head of the Psychology department my proposal and received no response. I am getting the feeling that educators and “experts” do not want to be told how to teach about mental illness from the likes of me, because I am merely a student. Reading books, memorizing facts, and doing clinical research is certainly valuable. But the lived experience of people with mental illness is valuable too, and it is rarely acknowledged. And if I got college credits for all of the reading and research I have done simply to better understand my own mental illness I would have a doctorate by now. We are all experts on ourselves. Please, do not teach ABOUT “my people” WITHOUT including us.

Disclosure at Work in Mental Health

I work as a mental health professional in an inpatient setting. As a former patient (not at the hospital where I work) and as someone who lives with depression (currently in recovery) I have a lot of knowledge and experience that my coworkers don’t. This knowledge of the mental health system from the inside allows me to be more helpful to and better understand certain patients. It makes me better at my job! But I am not “out” at work as a person living with mental illness. My co-workers don’t know about my past.

I love my coworkers. The majority of them are very kind, caring people. I wish that I could comfortably tell them about my history of mental illness. But I can’t. Some people reading this will probably think that I am being paranoid, that my coworkers would be perfectly accepting of me and that my past would be no big deal to them. Some of my coworkers WOULD be supportive, but the fact is that there are also people who would react negatively. People who would feel threatened by me, who would begin to question my judgment and my abilities. If you don’t live with a mental illness the stigma of and discrimination associated with mental illness is probably difficult for you to see. Just like white people tend to “not see” racism and sometimes deny that it exists because it’s not happening to them, people who have not lived with severe mental illness often do not see the stigma and discrimination that happens, even perpetrated by well-meaning people. I want to open your eyes.

I have been reading an excellent book called “Consumers as Providers in Psychiatric Rehabilitation” by Mowbray, Moxley, Jasper, and Howell (1997). In their introduction to the section on disclosure (which includes four personal stories of mental health professionals disclosing at work) the editors write that, “The authors illustrate the costs involved in disclosure: loss of status within an organization, discrimination by colleagues, ostracism, lowered expectations for performance held by supervisors, and disbelief that one can actually perform well in a mental health role.” (p. 277). All of the authors describe experiencing some discrimination and negative reactions at work, but the experience of Barbara (a social worker in an inpatient mental health setting) is especially horrifying. She writes that, “My decision to disclose my illness to some of my co-workers proved to be irreversible and a major mistake. Instead of being considered as a team member with valuable insight, I began to be regarded with suspicion… I had not anticipated the material for gossip I would provide. Often when I stated an unpopular opinion or made a legitimate complaint, I was accused of being delusional and even of hearing voices, although this has never been a part of my condition…With regard to my mental disorder, an almost mass hysteria developed: staff pretended they were afraid of me.” (p. 302-303). These accounts are scary, and the injustice these people faced makes me angry, but they also validate my experiences. I am optimistic, but I have good reason to be cautious.

Why do some mental health professionals react like this? Likely because they want to believe that they are somehow fundamentally different from their clients. They know how much suffering mental illness can cause so they want to believe that it can’t happen to them. Discovering that a coworker, a “professional,” has mental illness challenges their beliefs and makes them uncomfortable and afraid. It requires that they view patients as people who have roles beyond just that of “patient”. These attitudes seem most prevalent in inpatient settings where the patients may be low-functioning and/or in crisis. I think they are less prevalent among outpatient therapists who work more in-depth with their clients because they also see them when they are functioning well, not just when they are in crisis.

I do plan on disclosing to my coworkers eventually, but I want to be strategic about it and do it in the best way. The first step was earning my coworkers respect and trust. Once I had made myself known as a competent, reliable person at work I began to mention to some coworkers that I have experienced mental illness. So far it has gone ok, but my coworkers have no idea yet how severe my illness really was. It will be a gradual process. And I hope that disclosing will not be an irrevocable mistake.

People talk openly at work about their personal health issues such as weight loss, blood pressure, arthritis, cancer, and diabetes. I wish that I could talk about my depression like that at work, casually say “my depression is flaring up today” like someone would say “my arthritis is flaring up today” and have it be no big deal, because while I may not be feeling my best that day I am not going to let it affect my job performance!

Sometimes at work I feel like a fake, a crazy person pretending to be well who has secretly infiltrated the other side. I feel stuck in the middle. Whose side am I on? Who do I empathize with? Who do I stand up for? The patients’ or my coworkers’? I am both a professional and a client, and I am constantly managing, balancing these two parts of me. I know that I will make some people uncomfortable, but I will inspire others. I exist. I am here to help. And I am not going away.

Ingenuity In The Psych Ward

This poem is about the amazing potential in every psychiatric patient, and how even their challenging/harmful behaviors show such ingenuity, spirit, and creativity if looked at in a different light. All of the behaviors described were things I did while in the psych ward. People who are struggling with their mental illness are often struggling to find how to use their talents, their energy in a productive/positive way, to harness their energies and passions. I'm so glad that I've found my place with social work! I hope that reading it you will see that beyond "mentally ill" people's challenging behaviors is unlimited potential!

Ingenuity In The Psych Ward

Strip me naked

But I can still hide things,

I could've been an actress.

I'll take this pen apart
I found the spring, it's sharp!
I could've been an inventor.

Snap this plastic spoon jagged,
Because this life runs me ragged.
(I earned my finger food)
I could've been a cook.

White-out over "FULL"
I snuck some paint from the craft room,
To check the "DNR" box.
I could've been a painter.

I hid a razor in my shoe
Found a blind spot in the room,
I could've been a spy.

Took a ribbon from my waist
To tie around my face,
Pulled it tight 'til all the air escaped.
I could've been a tailor.
I could've been sane.