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.

 

Weight Gain and Psych Meds: The Unholy Alliance

I have had the gamut of experiences with psych meds over the years, both the good and the bad. But a couple years ago, I was put on the controversial drug clozaril. I avoided the most dangerous and damaging of its side effects, but it nailed me with the weight gain. In a very short time my weight went from 120 lbs to 190 lbs. And it was awful.

I am still struggling with the weight daily. I do my best to diet, and I have begun doing the DVD called Gentle Yoga. But I’m still on several medications that cause weight gain. So the struggle is real.

My issues with the weight are not the issues that most women struggle with. I actually always wanted to be fat. Most of my closest friends are fat, and I love the sweep and curve of them. Of course, I didn’t get fat like that. Nope. Nope. Nope. I gained all that weight solely in my boobs and belly…no curvy plump arms and legs for me! Nope! I look like an olive with toothpicks stuck in it! I look like I am in my third trimester.

I wanted to be fat like this. I didn't get my wish.
Venus of Cupertino Ipad charger by Eaton London

The other thing is that most fat people I know grew fat over time, over months or years. I gained nearly 70 lbs in less than two months. I had no time to adjust to growing fat, I simply WAS fat in what seemed like the blink of an eye.

With no time to adapt to my new size and shape, I became even more awkward than I was before. Things I used to do with ease are now difficult or nearly impossible. I have to struggle to reach around my vast belly to put on socks and shoes. I leave toenail polish on for months at a time. Really, unless my youngest daughter visits and paints them, my toenails are a disgusting untended mess. I remain baffled at things like driving-how hard it is to fit my big awkward body behind the wheel. (I’m glad I have not had to fly anywhere!)

On my last visit to the psychiatrist, I proudly told him I was losing a little weight. I guess I was looking for praise or validation from him. Instead he looked at my medication list and told me I still should be gaining weight with my current medications. Then he said I was dieting too much! I felt crushed. I have fought, struggled, and, yes, suffered to lose 14 lbs, and here I was being told that I was dieting too much.

As a mental health patient, I have gotten pretty tough. I can stand the slings and arrows of outrageous fortune pretty well. I do not shy away from new treatments or diagnoses. But there is one thing I do not want. I do not want this psychiatrist to decide that I have an eating disorder. Patients with eating disorders get a lot of attention. They get the sort of attention that I do not want. I don’t think I have an eating disorder, not now, and not in the past.

I know, I know, from those of you who knew me then, after Tom died, I did stop eating, and my weight plummeted. I remember that too. That was not an eating disorder, that was despair and grief. After a few months I returned to eating normally, and my weight stabilized.

So here is a conundrum. If I continue with the diet and exercise, and I continue to lose weight, I run the risk of this doctor taking an interest in my weight loss. I fear getting an eating disorder label stuck to me. I do not know if my fear is rational. The doctor dropped that PTSD diagnosis on me with no warning, out of a clear blue sky. Psychiatrists are a notoriously tricky lot, and I do not wish to run afoul of this man. I might have mentioned before that I find him alarming. But on the other hand, I really do need to lose weight. We are poor. There is no money for even a trip to Goodwill to buy clothes that fit me. My closet is full of size 6 garments, but they do not fit my size 16-18 body. It is a real problem. At home I live in soft old stretchy sweatpants and pajamas, and that works okay. But since I began participating in my own mental health, my life is a constant whirl of appointments. And to go to appointments, you need to get dressed.

I see people in the waiting room of the therapist and the psychiatrist in pajamas and sweats all of the time. But I know that showing up in your pajamas is noticed. I know that not being dressed appropriately is a point of concern in mental health care.

Up until this week, I have been without a Winter coat. In Pittsburgh. In Winter. I am just too fat to fit my coats. In an awesome turn of events, my therapist found me a well-worn thin wool jacket. It won’t be super warm, but it is far better than the thin leather coat I have been wearing.

I obsessively watch the posts of my fat friends, hoping that they will say that they are taking old clothes to the Goodwill, but they never are.

So the struggles are real.

The fear is real.

The scary thing really is how profound the ‘side effect’ of clozaril was. The idea that taking a tiny pill twice a day could translate into 70 pounds in a little over a month is very scary to me. These psych meds are scary to me. I want them to help me. I have a deep need to believe that they will help me. I want to get better, and I need these pills to help me get on the right track.

But the pills are terrifying. They really are.

When you start swallowing the pills, you really never know who you will be, or how you will be when they kick in. I have had pills change my entire personality. This clozaril changed my entire body. I fear taking a pill that might change my entire soul.

I have a mantra. I say it daily, as often as I need to. My mantra is ‘consciousness is not fragile.’ But as I contemplate how easily the meds alter my consciousness I wonder if my mantra is true.

PTSD: Something From the Psychiatrist

My new psychiatrist is an integral part of my new mental health team. He has a long Indian last name, so he is called Dr. Uma by everyone. He is so focused, attentive, and precise that I find him alarming,  but I think he is also very good at what he does.

A psychiatrist these days is not the old image. One does not lie on a couch and discuss one’s parents. No. You sit in a chair across the desk and the psychiatrist focuses on your symptoms. Dr. Uma fires questions at me that feel like they are being zapped out of a ray gun. Then he prescribes. I spend only about 20 minutes with Dr. Uma but it is much more intense than spending an hour with my therapist. After an appointment with him, I am shaky and weak, I only wish to lie down quietly and not be looked at for a time.

Two visits ago, Dr. Uma reviewed my medications and radically altered then. I was on a huge dose of seroquel, it did not help, it made me sleepy, it made me gain weight. I hated seroquel. The doctor had me quit the seroquel flat out that day, and prescribed geodon to start titrating up at once.

But before he wrote that prescription, and before I had decided to trust him enough not to kick at a medication change we both knew was going to put me through nearly a month of med Hell, Dr. Uma gave me something else: another diagnosis.

PTSD.

Voodoo doll with large clamp on her head. An image of suffering.
Voodoo Doll Tatto Flash by S. Grice, colored by me.

I guess I should have seen it coming, but, to me, it fell out of a clear blue sky.

To be perfectly honest, I am struggling with my new diagnosis. It feels like I didn’t earn it. PTSD is a warrior’s illness. I think of the soldiers with PTSD, and I feel unworthy to be diagnosed with it. It is true that I hate this (these?) war/s. But I honor and respect the warriors who are there fighting, those who risk their lives to obey orders and to defend their country. They did not make this war. I do not blame them. I would never scorn them. I will always honor our warriors.

Regardless of how I feel about it, the diagnosis is there, and I do think it is accurate. I have the recurring nightmares, I have the flashbacks. I do fall out of the here and now. I am perpetually being startled. If the slightest thing startles me, I jump, scream, and, sadly, if it is bad enough, I’ll wet my pants. And it doesn’t take much. My housemates have modified their behaviors so they don’t inadvertently sneak up on me. I wake from fevered dreams sweating and shaking. I know Dr. Uma is correct, I know I have PTSD…I just was not expecting a new diagnosis at this stage.

The good news is that the worst of the symptoms can be treated. The nightmares in particular can be treated. When Dr. Uma told me that, I nearly wept…not cried…wept. The only thing I can think of that would be better than not having the nightmares would be a letter from Hogwarts.

The bad news is that I have been having chest pain, and Dr. Uma will not prescribe the medications for PTSD until my regular doctor checks me out. I think I just have a touch of bronchitis, after all I live in Pittsburgh and it is Winter, and I smoke like a chimney, and in some bizarre turn of events, I took a little barefoot stroll outside the other night, and the housemates are both sick. So it is probably just bronchitis, but better safe than sorry, I suppose. I see the MD tomorrow.

Of course, there is a lot of anxiety about seeing a doctor for chest pain. Anyone would be nervous. And me? I’m pushing 50, smoke a lot, and my medications for the past 4 years have all had weight gain as a side effect. (And, believe me, I have gained weight!) Therefore, for the first time in my life, I’m also overweight. So I am worried. I’m having quite a few panic attacks, and my insomnia has shifted into high gear.

But if all is well with the MD, I’ll have the new medications, possibly before the end of the week. And new side effects. Since I don’t know the names of the new medications, I can’t research what side effects to expect. So I have stocked my nightstand with the OTC drugs that every psych patient uses to manage side effects. I put fresh sheets on the bed. I washed the two throws I keep at the foot of the bed because with my delightful hot flashes, often getting under the covers is too hot. In short, I am set up for a siege of new medication side effects.

I can not remember ever being so excited about a new medication. The hope of getting rid of the nightmares has filled me with giddy anticipation. The thought of getting a good night’s sleep-I simply have no words for that.

My insomnia is fueled by my fear of the nightmares. Often, I choose to stay awake, just so I don’t have the nightmares. I can stay awake for a couple of days at a time. That is bad for the schizophrenia, and when the schizophrenia is bad, my anxiety goes through the roof. Then my life feels so out of control that the depression kicks in hard from guilt and shame. It is the vicious cycle that creates the cage that is my life. Breaking one link in the chain feels like the start of freedom.

But this is a lot to take in.

The psychiatrist is the shaman of Western mental health. We expect him to divine our ills from the depths of his recorded notes. We expect him to shake his pill bottle rattles. We expect him to heal us body, mind, and spirit. He interprets our dreams. He probes the depths of our consciousness. He has no laboratory tests to guide him save testing blood levels of certain medications and vitamins. We expect him to walk through our damaged psyches and emerge with efficacious treatments. We expect him to fix our irreparable brokenness.

Our expectations of psychiatry are not fair. I try to balance psychiatry with spirituality. I pray daily, and I sit with my prayers waiting for blessings and answers from my Gods. (In my religion, they are called Orishas, but most people are not familiar with that word) My first set of dreadlocks did not take, so I am growing my hair to try again. This is based on an African idea that binding the hair can bind troublesome spirits to help stabilize a person. I am using all the tools my life has laid before me to find the road to wellness. So I try not to have unrealistic expectations of Dr. Uma.

But, right now, I do have unrealistic expectations of Dr. Uma. I daydream that this pill will stop the nightmares in their tracks. I daydream that this pill will break the chains of my illness, and that I will emerge from madness miraculously whole and sound. And I know better. I know it does not work like that. I know my expectations are ridiculous, and that I am about to be disappointed. I know I should be realistic.

But I’m not going to be realistic. These unrealistic expectations are part of my illness, I know that. But they also are my manifestation of hope. And hope is like a ray of sunshine in the darkness where I dwell. I know that, as always, the reality will not live up to my fantasy. But, for now, I choose to hope.

 

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.