The System Undermines its Desire for Us to be Compliant

In today’s mental health care, the patient is always coming up against the system. There is a sharp, painful dichotomy between the nurturing feeling of an appointment with a trusted doctor, therapist, or social worker, and the iron-clad unreasonable laws of the mental health system itself.

The Patient is often at odds with the mental health system, and their need to be compliant.
Image by: ifunny.com

I’ve had a couple weeks of butting heads with the system, and I have some good examples to illustrate my point.

But, first, I need to explain a central concept of mental health care: compliance. Compliance means exactly what it says it means. A mental health patient who is compliant takes all of their medications on time, every time; a compliant mental health patient arrives on time for every appointment. A compliant mental health patient gives 48 hours notice if s/he must cancel an appointment. A compliant mental health patient will always reschedule a cancelled appointment. These are the terms under which the patient may receive services. In many cases, my own included, non-compliant patients may be denied services. So, sadly the patients who most need help, but are not in a position to be very compliant can find themselves back at square one. I am glad to say that where I receive my services seems to be very flexible about accommodating patients’ needs and allowances appear to be made for people who are going through bad times.

However, in general, the terms of compliance do not offer flexibility. Even if your medication is making you sick to death, you take it, then whine about taking the medication and being sick to your therapist. Even if you live miles below the poverty line and rely on a cantankerous, un-inspected car to get to appointments, you go-even if you get a ticket you can not afford, you go. If the doctor gives you instructions on how to get your prescriptions refilled which deviate from the standard protocols, you comply, even if you come smack up against a brick wall of baffling administrative process. Mental health patients are often deemed worthy or unworthy to receive help based on their compliance.

Objectively, this seems fair. It seems to reward the patients who are working the hardest to get better. Unfortunately, the reality is quite different. In practice the system is nearly impossible to navigate for me, and I know that, comparatively speaking, I’m pretty high functioning. And nearly every other visit, I see patients at the breaking point from frustration, from fear, from poverty, or from pure D bafflement over how the system works. And remember, I just commended the system where I receive services for its outstanding flexibility. The realities elsewhere are much harsher.

Here are my personal examples to try to make this less abstract for you:

At my last visit with the psychiatrist, over two weeks ago, the psychiatrist ordered me to see my regular MD, to hand carry a copy of a recent EKG to the MD and get a clean bill of health before he would refill my prescriptions and add a new prescription for recurring nightmares. Seems reasonable enough. I was told to call the RN at the psychiatrist’s office to arrange my refills after I had seen the MD.

When I got to the psychiatrist’s front office, the trouble started. They could not find my chart. After they rooted and rammed all over the office, I was told that my chart had ‘probably’ been sent to another office to be ‘audited.’ So I had no copy of the EKG to carry to my MD, and now I had to worry about my missing chart. That chart is full of sensitive information, and I’m uncomfortable that 1)The System had NO idea where my chart was, and 2)The System has the authority (somehow) to send my chart ‘somewhere else’ for some person unknown to ‘audit’ and it is unclear what they are auditing the chart for. Not gonna lie here, I’m losing sleep over that chart still.

After my visit to my MD proved that I had a clean bill of health, I attempted to call the psychiatrist’s RN to renew my prescriptions. The front office will not allow me to speak to the RN on the telephone. All I may do is to leave a voicemail, and hope the RN will call. Two weeks later , three voicemails later and the RN has not called me, and my refills have not been submitted. I do not blame the RN. The message addressed three or four detailed fussy details applicable to different prescriptions. If I could have simply TALKED to her, where she could ask questions, and I could answer them, it could have been sorted. Instead she got the ‘term paper equivalent’ of a voicemail.  The front office informs me that the RN will not call, and that to get my refills, I need an appointment with the psychiatrist. I HAVE an appointment with the psychiatrist for when he wants to see me-in the latter half of March. But my prescription will run out in two weeks. This is called being between a rock and a hard place.

Example Number 2:

If I need to cancel an appointment with my therapist, I am expected to give a minimum of 48-hours’ notice, and to reschedule for the same week. Seems simple enough, right? In order to be seen for the aforementioned appointment with the MD, I needed to reschedule my therapist appointment. So I called. The Front Office-remember them? told me that my appointment had been cancelled, and that I could not reschedule as I had an appointment scheduled for the following week. (Actually it was today.)

Imagine my surprise last week when my therapist called to confirm the appointment I had cancelled four days prior. She had not been told that I called and cancelled, that I had not been allowed to reschedule.

So, here I sit. For the first time in my life really taking my recovery seriously, finally recognizing that getting better might just be my life’s work. And here I am being non-compliant on several fronts. And struggling not to be. Seeking a way to point out the brokenness of the system without sounding like a paranoid crazy person.

These systems are set up by the government, or by the hospitals ostensibly to protect some of society’s most fragile members. The office where my therapist and psychiatrist are located is an old school. It is a rabbit warren of offices that also serve the WIC program to provide nutritious foodstuffs to pregnant women, nursing mothers and small children. The same building houses a food pantry to feed the hungry. The same building provides free meals and enrichment activities to senior citizens living in poverty. And as I said, the building is a rabbit warren. Offices seem randomly placed, and signage is often minimal, unhelpful, or unclear. People are frequently simply not in the proper place. People do try to help, but not everyone knows where everything is, and sensible sounding advice can get you more lost.

And every other time I’m in there, or nearly every other time, someone is flipping out-either angry, or sad, or hurt, or frustrated, or confused. And I know that they serve people who have a high level of crisis, and I know that MH/MR clientele can be reactionary…but it can be really frustrating and stressful to be there even if you are not in crisis or meltdown mode.

It is not the people who provide the actual services-they are kind and compassionate people who go above and beyond to help. It is this system of efficient office personnel with their keyboards, and their clipboards. And their protocols of how to deal with every situation-protocols that are blindly followed instead of taking a moment to listen, then responding accordingly. The secretaries are nice people, but they are, shall we say…hidebound? These secretaries who are so quick to hang up the phone, so quick to mouth the words, ‘you can’t,’ ‘it isn’t possible,’ ‘we are not authorized to…’ Those words are automatic, they do not check, they simply apply the system’s walls.

It is not the end of the world. By enlisting the help of my therapist, I was able to see the RN in person, and all should be well with my meds. The therapist was also not surprised that she did not get word that I had cancelled my appointment. It was not the end of the world, nobody died, nobody cried. But it was stressful, and it was very frustrating. And I have a very real world fear of running out of all these pills.

Since I began my journey with mental health care over thirty years ago, the care has increased immeasurably in competence and in compassion. It is time that the systems that control and administer the caregiving also move into a more functional and compassionate model.

 

Sad Day for Schizophrenia: Grief and the Orisha

A friend of mine left the world today. It is a sad day. He was too young to die, but he had fought the good fight with Sweet Lady Cancer a long time. Saying good-bye is hard.

I woke up to this news, and all I really wanted was to pull the blankets over my head, roll up in a ball and hide. But that is not how you honor a fighter. When you honor a fighter, you fight the good fight, too. Even on a sad day, you fight. You follow the example. So I got up, I showered, I got dressed and I went to the appointment I had scheduled. But the best parts of me were still huddled under the blanket.

My appointment was with the ‘psycho-social vocational rehabilitation unit’ those are people who work very hard to find decent jobs for crazy people. None of that happened for me today. Today was an intake interview-just filling out endless forms. But it is a start, a small step in the right direction. So progress was made, even on this sad day.

I’m glad the appointment was just routine paperwork. I just sat and signed and dated the forms as directed. My mind was free to remember my friend-late night talks about weird and esoteric things, his face at crowded parties, head thrown back laughing, his serious face as he contemplated deep, deep unfathomable things. The memories called up an entire spectrum of feelings, it brought life and brightness into a grey and sad day.

For anyone, mentally stable or not, grief is a slippery state. Grief is a dark sequence of emotions, and they must be carefully traversed, and they must be fully traversed.

In my mind I begin to walk the well-worn path of grief for one who died too young. I really wish this path was the proverbial ‘Road Less Traveled’ but it is not. This path is wider and smoother than it should be. It is more familiar than it has any right to be. When I find this path in my psyche again I know that it is a sad day.

The Orisha calm me on sad days
Obatala from NacionYoruba.com

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I can not grieve only for this man who today died too young. All the others dead too soon crowd around me. I see the faces I will never see again, hear their voices, feel their hands gripping at me. All this grievous company clamor to me. ‘Remember me’ ‘Remember me’ they entreat. As if I could forget them, as if any of us could forget them. And today, there is a new face among them.

This was not the week for me to have to cancel my therapy appointment, but I had to, so it is as it is.

The voices are loud today. Every shadow has hands that grasp. I see a hundred expressions of his face in every reflection. Pete had to go to work early, so I am home alone, and today the house is very haunted.

I remember how we used to flirt outrageously at parties back before he got a girlfriend. Now he is gone with all those sweet might-have-beens.

And I am here.

Sanity is a struggle today. It would be easier to fall into the abyss. Today is one of those days where I would prefer to run toward the voices instead of running away from them. But that is no way to honor a fighter. That is no way to remember a warrior.

I struggle to control my ragged breathing. I stick my hands to the surface of this laptop. I grasp the silvery sides of the laptop, reminding myself that this is real. I urge myself to stay here, to follow the thread of this writing. I fight to remember that this is real. This reality is where I am expected to be. This reality is the place where I must function.

Facebook is overwhelming today. My feed is one post after another of my clan expressing their good-byes. It is a twenty-one gun salute of shock and sorrow. I try to stay away from the facebook page, but it bings seemingly non-stop. Chat windows appear with maddening frequency. Some of the windows are of my own doing as plans are made to attend the service. Rides are arranged, plans are made. Other windows are those who need to talk about it.

I am shaky in my own skin. But people need to talk. I know they are not talking to me, they are talking to the priestess aspect of me. With shaking hands, I straighten my invisible crown. I remember whose daughter I am.

I find it funny.

When my struggles to remain in the material world are so great that I might fall, it is my Gods in the invisible realm who help me stay. Maferefunfun, Obatala! (a blessing of cool whiteness to Obatala whose child I am)

When I am actualized in Orisha, (benevolent spirits, lesser Gods) I feel stable and in control of my life. But it is hard to maintain. Also, you can’t get too religious while you are in mental health treatment. There is a type of religious fixation that is common in schizophrenics-it is a warning sign to the whole treatment team, and it is an express ticket to a psych ward. So I need to thread my way carefully. It is hard this picking and choosing. It would be easier to be completely candid with my treatment team, but I do not care for psych wards, so I must be cautious. I can never share what the Gods tell me. I can never admit that most of the good and sound advice I act on comes from my Gods, not the advice of others or my own good judgement. I can not admit that I see the shining realms and expect to be believed.

There are no role models of how to be Priestess and Patient. There are no good words guiding you on how to grieve for your own loss, but shoulder the grief of others. There are no good ways to explain to your therapist that on certain days, under certain circumstances that the silent eyeless angels come alive, that they have hands and faces and names. To tell that for this next while that I will not ever be alone, to try to explain that there is no discord between the words ‘haunted’ and ‘beloved.’

Beloved of the Dead is how I was named. Nothing could be more true.

A Beautiful Ugliness: Musings on Being Ugly

My friend and teacher has been sharing some of her daily writing with me this week. She is writing about beauty, and her writing is captivating. All the beauty makes my head spin. I love beauty: beautiful music, beautiful art, beautiful architecture, you name it, if it is beautiful I probably love it. My entire being vibrates when I see beauty.

I think my love of beauty is because I am a homely creature. I was an actual ugly child, a really ugly adolescent, and as an adult, I’m still pretty ugly. I have pictures to defend these statements, trust me. That is not negative self-talk, or me running myself down. In a culture obsessed with beautiful women, I’m a proudly ugly one.

Photo of the Author
Photo by: B. Van Meter

It has been a long hard journey to embrace the fact that I’m never going to be pretty. But I have fought and learned how to be my own sort of ugly. It was not easy to get here. When you are in mental health care, you can find a support group for ANYTHING! Anything except being ugly. I guess it’s good that I’m no fan of support groups, because there is not one for me.

There are also not a lot of therapists who will let you alone about being ugly. I find this weird and distressing. I do not, I emphatically do not want a therapist who is gonna blow sunshine up my ass. Years ago if a woman said she was fat, some Little Mary Sunshine would immediately contradict her to tell her she had ‘big bones.’ No she didn’t. She was fat. And finally people are allowed to self identify as fat. Finally. So why can’t I self identify as ugly?

There is no good reason that I can not say I’m ugly. The fact of being ugly does not actually hurt my self-esteem. I have a few good points and I cherish them. Often I am at odds with my body. I have always felt like I was trapped in it. Truly, I want to live as a being of pure spirit-I would fly straight to my Egguns (beloved dead) and dance with them forever. My lack of love for my body is not based on anything as happenstance as its appearance.

I do think that there are a lot of circumstances where ugly people face some discrimination. That being said, I don’t think discrimination against the ugly is an insurmountable obstacle. If my looks don’t win you over, you are not alone, but I can win over almost anyone with my humor and intelligence. So I don’t worry too much about my looks putting me at a disadvantage.

The obvious exception to looks not being insurmountable is dating. As a heterosexual female, men expect me to display some beauty I do not possess. I am clever with my make-up brushes and my clothes, but I don’t get asked out very often. It would be very lovely to be dating someone, but I come equipped with the ‘baggage triple threat:’ I’m crazy, I’m ugly, and I’m weird. So thundering herds of eligible bachelors fail to beat down my door with predictable regularity.

But what does all this whinging about ugliness have to do with my struggles with schizophrenia?

A lot more than it should, sportsfans. A lot more.

There is no psychiatric harm in identifying oneself as ugly-unless you aren’t. (but that is someone else’s struggle, not mine) I should be able to discuss my ugliness with my treatment team, and have the fact be respected. But if I try it, I’ll end up in some self-esteem support group telling lies about new hairstyles just to escape. That is not fair.

There really is not anything wrong with my self esteem that I’m going to discuss on the internet, and what is wrong with my self esteem is wholly unrelated to being ugly.

We are all made up of layers and layers of facets like fine cut gems. Some facets are right on the surface, easy to see, possible to touch. But the facets that flash the brightest lie deep inside the gem. Some of those deep surfaces are bright and some are dark, but they all lie deep inside where surface contact will not disturb them.

The surface of my gem was poorly cut, the angles line up wrong to be harmonious to the eye. That is as it is. In my deeper layers, the lines are often jagged where they should be smooth. The lack of pleasing aspect on the surface is the ugliness the Gods gave me as a gift. The jagged lines that are deeper are the schizophrenia warping my light and darkness subtly so that I see a very different world than most. The same gem, two very different things.

And, yes. Yes. I did say that I consider my ugliness to be a gift from the Gods. And that is true. My surface is displeasing to the eye. I can rest secure in knowing that if someone loves me, they don’t love me for what is on the surface. I know that the very few people who love me love me on a very deep level, and I know I can trust that love to be load-bearing, because it has not reached my heart from a shallow place.

I will listen to anyone and everyone about balancing the schizophrenia, and I will try almost anything-from psych meds to psychotropics, I’ll listen and work to get better. That is a promise.

Just let me be ugly, I’m happier this way. That is a promise, too.

 

Rape and Schizophrenia Are Friends

So I’m not kidding around with therapy this time. I’m there to do the deep and hard work. I’ve been seeing this therapist since October, and we have done the easy stuff-religion, my life at Four Quarters then, my life with Pete now, and the people of those times who left a mark for good or ill. (Okay, nobody actually went into the ‘left a mark for ill’ department, but concluding that took a bit of sifting.)

So while working on this easy stuff the therapist and I got to know one another. We built a relationship that would enable me to do the hard work. I trust her a lot more than I trust most people. But I also know that I can not take therapy for granted. Medical Assistance pays my therapy bill, and they could decide to stop covering therapy at any time for any reason, so the therapist and I must go hard, because we never know how much time we have.

Last week, in my appointment I talked to the therapist in depth about the date rape that preceded my current derailment. I laid out what had happened in exacting detail. Continue reading “Rape and Schizophrenia Are Friends”