Confessions of a Non-Compliant Patient

Photo: Candy (CC)

Photo: Candy (CC)

Judi Chamberlin writes for the National Empowerment Center, Inc.:

A famous comedian once said, “I’ve been rich, and I’ve been poor, and believe me, rich is better.” Well, I’ve been a good patient, and I’ve been a bad patient, and believe me, being a good patient helps to get you out of the hospital, but being a bad patient helps to get you back to real life.

Being a patient was the most devastating experience of my life. At a time when I was already fragile, already vulnerable, being labeled and treated only confirmed to me that I was worthless. It was clear that my thoughts , feelings, and opinions counted for little. I was presumed not to be able to take care of myself, not to be able to make decisions in my own best interest, and to need mental health professionals to run my life for me. For this total disregard of my wishes and feelings, I was expected to be appreciative and grateful. In fact, anything less was tacked as a further symptom of my illness, as one more indication that I truly needed more of the same.

I tried hard to be a good patient. I saw what happened to bad patients: they were the ones in the seclusion rooms, the ones who got sent to the worst wards, the ones who had been in the hospital for years, or who had come back again and again. I was determined not to be like them. So I gritted my teeth and told the staff what they wanted to hear. I told them I appreciated their help. I told them I was glad to be in the safe environment of the hospital. I said that I knew I was sick, and that I wanted to get better. In short, I lied. I didn’t cry and scream and tell them that I hated them and their hospital and their drugs and their diagnoses, even though that was what I was really feeling. I’d learned where that kind of thing got me – that’s how I ended up in the state hospital in the first place. I’d been a bad patient, and this was where it had gotten me. My diagnosis was chronic schizophrenia, my prognosis was that I’d spend my life going in and out of hospitals.

I’d been so outraged during my first few hospitalizations, in the psychiatric ward of a large general hospital, and in a couple of supposedly prestigious private psychiatric hospitals. I hated the regimentation, the requirement that I take drugs that slowed my body and my mind, the lack of fresh air and exercise, the way we were followed everywhere. So I complained, I protested, I even tried running away. And where had it gotten me? Behind the thick walls and barred windows and locked doors of a “hospital” that was far more of a prison that the ones I’d been trying to escape from. The implicit message was clear: this was what happened to bad patients.

I learned to hide my feelings, especially negative ones. The very first day in the state hospital, I received a valuable piece of advice. Feeling frightened, abandoned, and alone, I started to cry in the day room. Another patient came and sat beside me, leaned over and whispered, “Don’t do that. They’ll think you’re depressed.” So I learned to cry only at night, in my bed, under the covers without making a sound.

My only aim during my two-month stay in the state hospital (probably the longest two months of my life) was to get out. If that meant being a good patient, if that meant playing the game, telling them what they wanted to hear, then so be it. At the same time, I was consumed with the clear conviction that there was something fundamentally wrong here. Who were these people that had taken such total control of our lives? Why were they the experts on what we should do, how we should live? Why was the ugliness, and even the brutality, of what was happening to us overlooked and ignored? Why had the world turned its back on us?

So I became a good patient outwardly, while inside I nurtured a secret rebellion that was no less real for being hidden. I used to imagine a future in which an army of former patients marched on the hospital, emptied it of patients and staff, and then burned all the buildings to the ground. In my fantasy, we joined hands and danced around this bonfire of oppression. You see, in my heart I was already a very, very bad patient!

One of the things I had already discovered in my journey through various hospitals, which culminated in my involuntary commitment to the state hospital, is that psychiatric drugs didn’t help me. Every drug I was given made me feel worse, not better. They made me fat, lethargic, unable to think or to remember. When I could, I refused drugs. Before I got committed, I used to hide the pills in my cheek, and spit them out when I was alone. In the state hospital, I didn’t dare to try this trick. I dutifully swallowed the pills, hating the way they made me feel, knowing that, once I was free, I would stop taking them. Once again, I was non-compliant in thought before I could be non-compliant in deed.

Now I want to make one thing very clear here. I am not advocating that no one should take psychiatric drugs. What I am saying, and I want to make sure this point is understood, is that each individual needs to discover for himself or herself whether or not the drugs are part of the solution, or part of the problem. Many people I know and respect tell me that they would not be where they are in their recovery were it not for the particular drugs that they have found work for them. On the other hand, many others, of which I am one, have found that only when we clear ourselves of all psychiatric drugs do we begin to find the road to recovery. We need to respect these choices, and to understand that there is no one single path for all of us.

Psychiatric drugs, like all drugs, have side effects. If the positive effects outweigh the negative effects, then people will generally choose to take the drugs. When the negative effects, however, outweigh the positive ones, then the choice not to take the drugs is a good and reasonable one. Side effects can be more easily tolerated when one is gaining something positive in return. Let my give an example from my own experience. Every day, I take anti-inflammatory drugs to control the symptoms of arthritis. Without these drugs, I would be in pain much of the time, and find it difficult to move easily. I’m willing to put up with the danger of developing ulcers (and I take another drug to help protect my stomach), because the cost/benefit ratio works out in my favor. If, on the other had, the anti-inflammatory drug didn’t relieve the arthritis pain, then the cost/benefit ratio would go the other way, and I would stop taking the drug and discuss with my rheumatologist what other approach to try.

Here is the key difference between what happens to psychiatric patients and what happens to people with physical illnesses. With my rheumatologist, and with my lung doctor (I also have a chronic lung disease). I am a full partner in my own treatment and recovery. I am consulted, listened to, and given the information I need to make informed choices. I acknowledge that the doctors have expertise that I lack, and they, in turn, acknowledge that I have information about the workings of my own body that they need to guide them in their recommendations. Sometimes, we disagree. Then we talk about it. Sometimes I take their advice, while other times I don’t.

Psychiatric patients, on the other hand, are usually assumed not to know what is best for us, and to need supervision and control. We are often assumed to be talking in code; only so-called “experts” can figure out what we really mean. A patient who refuses psychiatric drugs may have very good reasons – the risk of tardive dyskinesia, for example, or the experience of too many undesirable negative effects. But professionals often assume that we are expressing a symbolic rebellion of some sort when we try to give a straightforward explanation of what we want, and what we don’t want. I’m sure you’ve all heard the many psychiatrist jokes that feature the punch line, “Hmm, I wonder what he means by that?” Well, doctor, I want to tell you, we usually mean just what we are saying. In the slogan of the women’s movement: “What part of no don’t you understand?”

I consider myself a very lucky person. I don’t think that I have some special talent or ability that has enabled me to recover when so many others seem stuck in eternal patienthood. I believe that recovery is for everyone. In the words of the mission statement of the National Empowerment Center, we: carry a message of recovery, empowerment, hope and healing to people who have been diagnosed with mental illness. We carry that message with authority because we are a consumer-run organization and each of us is living a personal journey of recovery and empowerment. We are convinced that recovery and empowerment are not the privilege of a few exceptional leaders, but rather are possible for each person who has been diagnosed with a mental illness. Whether on the back ward of a state mental institution of working as an executive in corporation, we want people who are mental health consumers to regain control over their lives and the resources that affect their lives.

One of the elements that makes recovery possible is the regaining of one’s belief in oneself. Patients are constantly indoctrinated with the message, explicit or implicit, that we are defective human beings who shouldn’t aim too high. In fact, there are diagnostic labels, including “grandiosity” and “lack of insight,” to remind us that our dreams and hopes are often seen as barriers to recovery instead of one its vital components.

Read more here.

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  • erte4wt4etrg

    Disgusting loveless society

    • https://twitter.com/anti_euclidean ÿ

      ⸘Hay look‽

      It passed the Turing Test.

  • BuzzCoastin

    Every drug I was given made me feel worse, not better.
    They made me fat, lethargic, unable to think or to remember.

    the cybor food supply has the same effect
    if the package lists more than 4 ingredients
    and has a lot of unfamiliar words like Azodicarbonamide
    it’s cyborg chow

  • InfvoCuernos

    I’m sure there are a lot of stories of how doctors have mismanaged someone’s health, but its really about that one time they saved your ass from dying. Doctors are like cops. A necessary institution that needs severe adjustment. The educational debt burden put onto doctors insures that they will almost have consider the more expensive treatment as a matter of their own survival. I think that some kind of incentive to go into the medical profession would have been worthy of putting into a national health care program, but the assholes in charge felt the need to be partisan, and of course that would mean cutting into someone else’s pockets, so we’ll just crisis manage the whole fiasco.

    • Mr B

      Can’t say I’ve ever needed a cop in my life.
      Notoriously racist bullies, with limitless authority, who never found my stolen bikeS.

      • InfvoCuernos

        Yes. I am 100% in agreement on that. They definitely darken my day most of the time, but without them, I would need a lot more ammo.

  • https://twitter.com/anti_euclidean ÿ

    Psychiatric drugs, like all drugs, have side effects. If the positive effects outweigh the negative effects, then people will generally choose to take the drugs. When the negative effects, however, outweigh the positive ones, then the choice not to take the drugs is a good and reasonable one. Side effects can be more easily tolerated when one is gaining something positive in return.

    I’ve had more than one stretch paying for the pharmaceutical industry’s solutions to the ills of modern living, and aside from the most recent stretch, without fail, the side effects were significantly worse than being in an unmedicated state. Honestly it’s a bit difficult to make the distinction, since one is the fryer and the other is the fire, but why be miserable and full of weird shit?

    This last episode could be an outlier though. I now eat a primarily organic/locavore diet high in antioxidants, stay well hydrated, meditate, have a mindful movement practice, and there are several great green spaces within walking distance. I also combined my the official treatment protocol with a heavy regimen of acupuncture (to amazing results!!!), cannabis (ditto!!!!!), and the power of positive intention (meh?).

    The doctor who handled my prop 215 renewal made an interesting observation about MDD: no other “patient group” so worries and agonizes about conventional treatment protocols while simultaneously constantly questioning the efficacy and decorum of any non-conventional treatment they find to be helpful. That insight alone was worth the price of the visit. There was also an important benchmark supplied to test that I was engaged in treatment and not addiction (as I had disclosed the family history with alcohol): “Are you handling your business?” He thought so plainly, and evidence seems to concur.

    From here on out, I know there is at least one pharma that was marginally useful. I also found the most helpful psychologist yet, so when I meet my deductible and have copay money (lol), a little talk therapy can go a long way. Fortunately cannabis and acupuncture are relatively inexpensive and easy to obtain where I live.

    • Number1Framer

      I’ve heard alot about the positive effects of acupuncture (as in bulleted lists of “it helps with this and this and…”), but what does it actually feel like? How would you describe having the procedure done? I’ve always wanted to try it out just for the hell of it.

      • https://twitter.com/anti_euclidean ÿ

        You know, I tried to discuss it with the acupunks, but I found that they’re generally reluctant to describe the experience itself. I’m guessing it’s of a highly subjective nature, and they don’t want to prime expectations. Based on my limited observations, most people (upwards 70%) are so relaxed they simply fall asleep. You can usually tell the newbs by their inability to sleep and/or sit for more than 30 minutes.

        As to application of the needle, I usually felt nothing more than a brief, slight pressure for most body parts (ears are a notable exception). There may be slight discomfort for certain body parts at first (calf muscles were troublesome spots early on), but that will usually dissipate fairly quickly. If not, your specialist can remove the needle(s) and/or try other locations.

        I recall a ~45 minute first session. Needless to say, I completed the initial treatment protocol and have been back whenever funding allows. Community acupuncture can be found in most major metropolitan areas in the US on a sliding fee scale of $15-$35 per session + $10 first time consultation.

        I’d feel remiss if I didn’t offer the following caveat emptor (not that this applies to you personally, N1F): it’s not a miracle cure. If one is living an “unhealthy lifestyle”, it won’t do the heavy lifting all by itself. That said, I found the results to be pretty powerful across the board, especially for the price point.

        I’ll go one further and say, if it came down by necessity to make a choice: “Eastern medicine” vs. “Western medicine”, I would go east.

        • Number1Framer

          Interesting. Thank you both for your insight. I don’t have a “reason” to try it, but for that price, I just might have to make an afternoon of it sometime.

      • Jin The Ninja

        it depends on constitution and meridians used.
        everyone is different.
        for myself it is painless- however i start to feel a mild, but intense electricity after about 5, intensifying when they twist the needles to amplify chi. at most it’s ‘uncomfortable.’ but most people don’t feel such things. it’s best used as a compliment to herbal medicine, moxibustion and tuina, but for quiting smoking, migraines, back pain- it can be quite helpful on its own. the goal is to balance the energy of different organs and vital points within the body to assist vital function, in that it can really help chronic pain instantly. long term use offers more potent effects.

  • Mr B

    Gosh, the state treating the common man with contempt; fancy that.

    Welcome to Earth Judi Chamberlin.

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