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.

 

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”

Do You Hear What I Hear?

I get asked why I am sometimes resistant to getting help.

I am resistant at times, I know it, and I don’t hide from that resistance. You see, my illness is normal for me, schizophrenia is my comfort zone. I’m smart enough to understand that a lot of my existential misery would simply evaporate if I could somehow become mentally healthy. And yet, I am resistant. I fear psychiatrists, therapists, medications, and other less mainstream treatment modalities like ECT. Frequently, I do find the courage to face up to and accept recommended treatment, but sometimes, I do not.

If I had a magic machine that could catapult you into the future to some fantasyland where there was world peace, where there was no sickness, where all of your day to day problems would be miraculously solved, I’d be willing to bet that very few people would be willing. Because this current time and place, these issues, these woes are familiar. You are comfortable here.

Health does not always feel as comfortable as illness.
Health does not always feel as comfortable as illness.

You can argue that mental health is a concrete, attainable goal, and that my machine is a hypothetical construct. I disagree. I strongly disagree. I don’t know of anyone living with mental illness who will say they are ‘cured’ or ‘better.’ At the very best, they will say guardedly that something seems to be working-for now.

When I fall deeply into my illness, I do not feel much in the way of hunger, tiredness, pain. When I am very sick, I never cry. My visions and voices can comfort and soothe me at least as much as they torment me. In my illness, I am visible at least to my invisible world. When I am in health, I live a marginalized life far removed from the real lives of friends and permanently estranged from my living family members.  If I am quiet when I am healthy, I can live as a forgotten person. When I am at my sickest, my voices, my visions are all attentive. In my unreal world, I am far more real than I am in your real world.

Understand that working toward mental health is not always an appealing process. And the newer team-centered approach puts a lot of the work squarely on the shoulders of the ill person. This is not like physical medicine where you just jump through the hoops prescribed by your doctor: get this test done, take this pill, see this specialist, and come back here in two weeks.

In mental health work today, your therapist will ask what you want to talk about. The days of the therapist saying, “Tell me about your mother…” are long gone. I can waste my hour with my therapist talking about the weather if I choose to. And I have. And I will again on the days when there is not much fight in me. But on my brave days, I give detailed accounts of being raped, of losing a love to the dubious joys of the needle and the spoon. I emerge from these sessions feeling like I am coming down with the flu. Chills, sweats, shaking, vomiting follow a ‘good’ therapy session as sure as night follows day. Often after a ‘good’ therapy session, I need to spend a day or two in a darkened room, just trying to re-integrate my personality. After a ‘good’ therapy session everything is too much.

Outside of therapy, there is a delicate juggling act between a regular MD and a psychiatrist MD. These two professionals endlessly circle like cats, unsure if they will fight or not. Territoriality among the professions is as rigid as the laws of the seraglio. The psychiatrist can withhold changes of medication, or new medication until the MD signs off on some aspect of the patient’s health. The MD can withhold medications for the patient’s physical health concerns until the psychiatrist approves. Often the middle ground is a compromise that does not actually offer the patient much relief.

As a participant in team centered mental health, you see a lot of waiting rooms. You can judge a waiting room good or bad with the barest glance. Too, you come to realize that you are better off, usually, in a bad waiting room. A bad waiting room means that no one waits there long enough to have complained. You fear the good waiting room-the one with the deep comfortable chairs and good magazines-you’ll be there for a while.

Struggling toward mental health is a long grim and difficult process. I’m not saying that the goal of mental health is not attainable or not worthwhile. I am saying that it is very very hard, and the journey never ends, and the destination is uncertain. Struggling for mental health is asking to be a permanent refugee. The mentally ill are not welcome in the realms of the mentally healthy, we always rub a bit wrong, our otherness is always visible.

The world I’m struggling toward as I fight a losing battle for mental health is fraught, and grey and distressing. The social issues are real and very disheartening. My illness burns in me as a vessel wrought of glass and fire. It casts strange lights. The eyeless angels and the faceless voices croon and embrace me. I can float in my world of beauty and horror, and if I am patient, I will see wonders. What we accept as mental health in this day and age is a half-life that will be marked with struggle and suffering, marked by poverty and isolation, marked by whisper, discreet pointed fingers, by stigma.

So, yes. Yes, yes, and yes, at times, I am resistant to my treatment team and their advice. At times on the road to wellness I turn and look back, daring fate to turn me into a pillar of salt. There is very little light on the road to recovery, and there is rarely hope. So I turn around. But my feet keep shuffling relentlessly forward.