On side effects and choice

So, I went to the doctor today, because they wanted to talk to me about some blood test results. No problem I thought. My creatinine reading is usually off, and I figured that’s what they were worried about. It’s a walk-in clinic doctor and I had forgotten to warn them when they ordered the blood work. I have Nephrogenic Diabetes Insipidus from taking Lithium for 12 years. It means that my kidneys don’t concentrate urine. Long story short, I know where all the public washrooms in the Greater Toronto Area are. Not fun, but I have learned to live with it.

So I’m all prepared with my speech about how I forgot to warn them about the blood test. Problem is, that wasn’t what was wrong. Turns out the filtration rate in my kidneys is so low it is indicative of chronic, severe kidney disease. Off to the specialist with me. When I originally had problems, the specialist said I might lose 2-10% of my kidney function per year, or nothing might happen. I had been going with the nothing option because I had no symptoms and everything else seemed stable. Looks like I might have been wrong. Specialists are on holidays in August, all of them apparently, an no one seems alarmed enough to send me to a hospital, so I get to wait until September to find out whether panic is appropriate in this situation. Either way, it is making me think.

On a mailing list I am a part of, there has been a discussion lately about ECT. Specifically the ethics of putting an ad online looking for volunteers for a study, with the explanation that ECT “creates new brain cells”. This last bit was news to me, as far as I know creating new brain cells, not just new connections, is up there with having tea with a Higgs-Boson particle in terms of probability. Either way, this ad created a great deal of discussion. There was a response to the ad in this online forum, in which the respondent called ECT a human rights abuse. I am not a fan of throwing terms like that around, it smacks of fear mongering and invalidates the experiences of people who have benefited from ECT.

I have two friends who have been zapped in a medical way. Both of them experienced some memory loss, but they also derived benefit from the procedure that lasted for quite a long time. They have both had ECT multiple times and neither of them seem bitter, angry or feel they were coerced into consenting. This is not to say that all people who have ECT have a lovely time of it. Many people are seriously damaged, there can be catastrophic memory loss, and some people lose themselves entirely. ECT is obviously a last-case scenario as far as I am concerned.

One of the big issues was consent, specifically informed consent. Many patients are given a pamphlet, and a date and time for their first treatment, and that’s it. This is obviously not sufficient. One of my issues with consent while you are an inpatient is a bit tricky for me. I know, from my own experience, that when one is suicidally depressed you don’t always make the best decisions. For example, some depressed people are in so much pain that they decide to kill themselves. Probably not the most rational decision. When you are that depressed, and therefore a candidate for ECT, is it even possible for a person to give consent or are you so tortured and in so much agony that you would consent to a lobotomy if you were told it would alleviate your suffering?

There is a great deal of discussion on the list, and among patients in general, about autonomy and choice and being in control of your own treatment. There is a lot of talk about how we are sometimes treated against our will, that doctor’s prescribing practices are heavily influenced by pharmaceutical company PR and swag, and that the mentally ill are treated like imbeciles. We are “in denial” or “not in our right minds” according to the advertising campaign of one of the big hospitals here, and this touched off a firestorm of offence and indignation in the part of the community I am in contact with. The argument being that madness is not incompatible with competency, that we are still able to be part of our treatment decisions and that we are not mindless idiots because we occasionally lose our marbles. To a certain point I tend to agree with this.

The problem lies in the fact that you can’t have it both ways. Either you are competent to make decisions, and can consent to ECT, or you are not. If you are not, all choice is taken away from you and you lose all control. If you consent to something like ECT out of desperation without really understanding the consequences because you are too out of it, you could end up losing years of your life. It is a difficult thing to grapple with.

Historically the mentally ill have been treated very badly. There are still people alive today who were treated with lobotomies and insulin comas. Very often a crazy person would be locked away from society until their minds had been destroyed by drastic treatments. The goal was often not to cure, but to make the person docile enough to manage. There was not a lot of informed consent going on.  In the age of pharmaceutical miracles, drugs were used that caused horrific side effects. They controlled the psychosis or the mania, but left the patient little more than a zombie, or caused irreversible movement disorders. Patients who rebelled and decided to live with the psychosis rather than become a chemically created member of the living dead were often involuntarily committed for non-compliance. Neither option is really ideal.

In my time as a medicated crazy, the drugs have been marginally better. Sort of. Some of the newer atypical anti-psychotics are known to cause diabetes or metabolic disorder, weight gain is a given, tardive dykinisia is still a very real possibility and even the much lauded anti-depressants have serious side effects. I have often been told that the side effects from the SSRIs are negligible, and are no reason to stop taking them. Some of them include: decreased sexual ability, somnolence, agitation, increased risk of suicide, significant weight gain, and many more. None of these will make you very happy, and some of them are serious health risks. Benzodiazepines, which are the miracle drug of choice for anxiety, are fabulously addictive. They are the famous “Mother’s little helper” that so many people have become addicted to. They are also ridiculously cheap, and handed out like candy. One of the side effects of heavy benzo use is depression, which can lead to a prescription for SSRIs. You can see where this might lead.

As I mentioned before, I have had serious problems with lithium. I never had a problem with feeling dulled, or stupefied with lithium. I was always able to function well, and maintained my ability to be creative, but the long-term effects on my body have been harsh. I don’t actually regret taking the drug. When I am being honest with myself I know I would not have survived the 12 years I was on it without the stabilizing effect of the medication. I just wish there had been more alternatives.

I also took another medication in the 90’s which unbeknownst to me rendered the birth control pill ineffective. This was not listed as an issue in the product monograph, and my doctor was not aware of it until I showed her what I had found on the internet. From what I understand, that is part of the product warning now, but when it affected me there was no mention of it. Not a great way to engender trust in your customers.

There is a lot of research into medication now, and a huge emphasis on medical treatments for mental illness. I believe there is something wrong with my brain, and I am not opposed to medication, but I find this single-minded focus on drugs to be alarming. There are a number of non-chemical treatments for mental illness that have been found to be very effective. Cognitive Behaviour Therapy and Dialectical Behaviour Therapy being the two examples I am most familiar with. There is also some evidence that improving the living situation of the person tends to improve the symptoms of the illness.

Being in a panic about whether you will have a safe place to live and enough food to eat will exacerbate symptoms of even mild depression and anxiety. The stress of living in poverty, or fearing for your safety, can be triggers for mental illness, and there is a lot of research that mental illness is much more prevalent among the poor.

I worry that the focus that is placed on the biological determinants of the illness takes away from attention being paid to the psycho-social factors that are involved. There is a lot of money for new drugs, but the waiting list for the DBT program at the local psychiatric institution is two years long, and they only open it up for new people every once in a while, so you have to keep calling and hope the list is open that day.

Doctors who are being honest will tell you, and I have been told this, psychopharmacology is still in the medieval period of it’s development. We still don’t know why the medications that do work, work. The mechanisms of how drugs relive the symptoms of mental illness are hinted at, and researchers have some ideas, but they have not been completely pinned down yet. In the mean time the pharmaceutical industry is driven, not by altruism, but by profit. GlaxoSmithKline was recently fined $3 billion dollars for misconduct in the promotion of it’s products, two of which are used in the treatment of depression. This does not make me trust them more.

I fully believe that medications will become better and safer, and I think that eventually pharmaceutical companies will be reigned in and will not be able to exert as much pressure on doctors. I think there will be more regulations about publishing all the studies which are done on new drugs, not just the ones that support the position of the drug companies that funded them. I also think mental health treatment will become more humane, and more compassionate. I think there will be more funding for non-medical interventions and community support. I am glad that I went mad now and not 60 years ago.

I do wish, though, that there was more weight given to the issue of side effects, and damage to patient health. Side effects can be debilitating, physically and mentally. Most people who are not compliant with medication regimes are that way because they cannot tolerate the way the drugs make them feel. This is very rarely taken into consideration. I had a doctor ask me once, during a lecture I gave, what to do about a non-compliant patient. She said “I keep telling him how good the medication is, but he just won’t take it”. I asked her if she had asked him why he wasn’t taking the medication, and she just looked at me blankly.

Medicine, regardless of the whole “do no harm” thing, is not without risks. Surgery is risky, chemotherapy is poison and causes infertility and infection, there are no medications without side effects. Psychiatry is no different. Until more research is done and safer drugs are available we will have to live with either serious illness or serious side effects. Psychiatry needs to make sure that there is informed consent, which means that before ECT, or lithium, or paxil, a patient needs to know what damage the treatment can cause. Even the very depressed deserve to know what they are getting into.

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Psych Ward Value Added Bonuses: Humans

In my dream, I road tripped with Andrea and the Kitten. We were young, all about the same age with a car. We drove through a strange town, without directions, but still ended up at the hotel. We were unblemished, unscarred and our minds were free of clouds of any sort. They stayed up to watch television, not needing any sleep, but I went to my room and slept. Oddly enough, this is the point where I woke up.

Of course the Kitten is much younger than Andrea and I. She is going to deliver babies. She is young, but not invincible. She has been hurt, and pierced, and not just by the hardware in her ear. She is beautiful. Whatever part of her that appreciates love and compassion, that is bowled over by the cuteness of a kitten and beguiled by a small child, is fully intact. She has grown up in a world 15 years different from mine. She has lost people close to her as a result of mental illness. She combines a gentle naiveté about humanity and goodness, that I have lost sight of, with a keen understanding of gender politics. She eats according to her ideology, something that I admire, without feeling the need to enforce that on the world. Enforcing anything on anyone is really not her style, although she is a strident advocate for tolerance and acceptance. We connected over the issue of self-harm, that insidious addiction which infects both of us. She does yoga and goes to art exhibitions, and is part of the world.

Andrea, a writer, is my age. She has a son, grown and fighting hard for independence while still needing love and closeness. He lives a plane ride away in the far away town they come from. She lives here, a short train ride away from me, near the big city. She is more the more damaged of the three of us, although she won’t give herself a break on this one. The trauma of her childhood and the inevitable replay that carried through her life has already led to drastic measures. She has tried to sever herself from who she was, moved away and changed her name, but her past self clings to her, held to tight by a bloody umbilical cord, her present self a not fully delivered child. She is, all at the same time, and not necessarily in this order, a notorious political author, a mother, a victim, a warrior, an addict, a survivor, an editor and my friend. She is frighteningly articulate, and a passionate lover of films and movies. She is looking for a reason to keep fighting, when the goal seems to be making it to the bottom rung of the ladder.

The Kitten, Andrea and I lived together on a ward in a psychiatric institution. We shared that bizarre life that centres around med time, tv sharing, smoking passes and snide sidebar conversations about doctors and nurses. We went to psychoeducational classes together, learned about techniques for distress tolerance and the current model for managing out-of-control emotions. We had clandestine chats about ourselves, how we ended up in this place, who we felt we were. Even though it was against the rules, we shared ourselves at that intimate level that is reserved for fellow hostages or inpatients. A strange, tight knit kinship, developed in a very short time, which I have only experienced in psych wards. A frantic need for closeness brought on by shared trauma or illness. It is incubated in a weird petrie dish of artificial rules, a rigid structure of authority imposed by the medical staff, and a closeness to death and madness. The psych patient is almost like a teenager, wild and emotionally unruly in the beginning, gradually given more and more privilege, gradually more and more stifled by the strictures of the ward, but at some level terrified of being kicked out of the nest. In this artificial state of adolescence, dependence and rebellion, we form the tight, strange, fierce bonds you most often see in high school. There is gossip, a hierarchy based on degrees of functionality and the petty squabbles you might find among adolescent girls. There are clandestine hi jinks. The time I was inpatient with Andrea and the Kitten there was an outbreak of sponge ball throwing, and the occasional fruit bowling tournament.

More serious are the friendships that begin to exclude others. Exclusive friendships that take over from the therapeutic relationships we are supposed to form with the staff, close ties that make other patients feel left out. These are the ones we are constantly warned about. Andrea and I skirted around it by hanging out with others, while the Kitten was drawn into a triad that was seen as more disruptive. I understand the need for this kind of rule. Many patients have experienced trauma, and listening to someone recount, in excruciating detail over dinner, how they were raped at knife point is very triggering and can bring on terrible fear and flashbacks. It is pretty unpleasant for those of us who have not had similar experiences too. Patients are meant to be focusing on getting well, learning to manage their emotions, not wallowing in the pain that brought them to this point. I see the value in that, but I also understand the vital role in recovery played by peer support. No matter how compassionate, learned or experienced a psychiatrist or a nurse may be, it is highly unlikely that they have ever lost their minds. Of course there are some, madness is prevalent in the medical community as much as it is in the general population. On this ward, though, I seriously doubted that any of my caregivers had personal experience with Suicidality and a loss of reason. When your mind is reeling, when you can’t trust your own perceptions or emotions, you need to know someone gets that in a visceral, personal way.

In my life, recovery includes peer support, mostly informal. You feel less freakish; you have to explain less in return for more understanding. The other benefit to these forbidden conversations with other patients is the exchange of information. I’m an old timer. I’ve been doing this for 20 years. I have been in a lot of programs, tried a lot of therapies and seen a lot of doctors. I know, for example, what some of the other programs offered by this hospital are like (pretty good), and I was able to calm the fears of one woman who was being sent to one of them. Also, I have friends who have had the dreaded ECT, some with very good effect, none who have been turned into walking jello. I wouldn’t advocate one position or another, but I will pass on what I know given that there are so many horrific stereotypes swirling around various treatment methods.

I also have done a lot of research into medications, which has not turned me into a rabid anti-psychopharmacology nut. I’m a science based person, and I have no problem explaining the mechanism of a selective serotonin reuptake inhibitor to someone in layman’s terms, always with the caveat that Your Mileage May Vary, but mostly with the message that patients have the right to research the medications they are prescribed, and the right to be active in their chemotherapeutic care.

I know that many patients who are ‘med resistant’, which is to say ‘badly behaved’ when it comes to taking their meds. Often they are that way because of intolerable side effects. Weight gain is so tied to women’s’ self esteem and self worth, but in the past I have been told that my significant weight gain was something I should control, and not a good reason to switch from a medication that was ‘working’. I have also spoken to men (and women) for whom the sexual side effects of some antidepressants were impacting their mental health, and led to them going off their meds. No one warns you about side effects like that, and they are also not seen as a good justification for changing a medication regime (unless you stumble upon a particularly enlightened doctor). I also learned, from a peer, that one of my medications nullified the birth control pill. This was not in the product monograph, and not listed anywhere in the literature. I brought this interesting tidbit of information to my doctor, who did some research. Turns out it was true, but suppressed by the manufacturer because it was not considered significant. Oddly enough, this fairly significant side effect is now on the product literature.

Just as an aside, I once spoke to a group of mental health professionals, and one of them asked me about med resistant patients. She said she had tried to explain to one patient how good a drug was, and what the benefits were, but he still refused to stick to the regime. I asked her if she had asked the patient why he did not want to take the drug and she looked at me blankly.

There seems to be a bias in the medical profession, when it comes to mental health, that peer support is somehow untrustworthy, and only recently has there been any grudging acceptance of the value of peer support workers. My personal feelings about this are fairly strong. I feel like a great number of the doctors I have seen have pictured me as a fairly interesting medical object, as a problem to be solved or a case to be cleared off their desks. Not in a cruel way, and probably because they feel the need to protect themselves from us, the deranged, but just not seeing us as fully human beings capable of being partners in treatment. Many of them, despite their extensive training, or maybe because of it, have the same internalized stigma about the mentally ill as the rest of the population.

This will tick off a lot of people, but let me explain. I am a mentally ill person, and I have internalized this stigma, that I am lazy and a malingerer. I am uncomfortable when I encounter a person on the subway who exhibits clear signs of psychosis, even though I know there is no danger. At some deep level, I feel like I should be able to pull myself up by my own bootstraps and pull myself together. This is because of the culture that I grew up in. If it affects me, with my 20 years of evidence to the contrary, you can be sure that it is there in a significant portion of medical and mental health professionals. This stigma leads psychiatry to discount our ability to counsel and provide support to other survivors/consumers/patients. We are not trusted, because of the perception that we are so prone to being unhinged and unpredictable.

When I left a major hospital in Ontario, there was a small program of peer support groups back home for former patients, arms-length supported by the hospital. Every year we would go back to the hospital for reunions, and every year we listened to the few converted psychiatrists tell us how hard it was to get the medical staff to recommend the peer-led groups to patients on discharge. We were not even looking for financial support, just some advice and for the staff to spread the word that there were groups in many towns in Ontario waiting for people when they got out. Gradually the program fizzled out. There was no support from the hospital; the reunions petered out because people felt like they were not being heard, and gradually the group I belonged to dissolved.

I don’t believe that peer support and psychiatry, or psychology are mutually exclusive. I am quite certain that dealing with complex mental illness requires a diverse and equally complex response. For caregivers and doctors the pressure must be enormous if they are a person’s main or only source of support. Burnout is a real possibility in doctors, counsellors and social workers. And, to be fair, it would be hard on family and peers if they were the only support for a person struggling with serious mental health issues. I have a psychiatrist, a therapist, a family doctor, a husband, a peer group, and various other friends. I like to spread the pressure around. For one thing, no one person gets the brunt of my illness, or issues. Also, I get a wide range of perspectives on what is going on with me; there is a diversity of ideas and options to match my different and changing needs for support.

Given that there are many people who struggle with mental health issues who are moving away from the medical model, the Mad Pride movement is one example, some questions should be asked. First, what is missing for these people in the medical model? Is there something about the model that does not take into consideration the range and depth of human experience and emotion? This model reduces our struggles to illnesses that need to be medicated into submission. There is very little emphasis on psychotherapy, on the role of emotional healing. In numerous studies it has been shown that a combination of medication and psychotherapy is the most effective approach, and also that it is not the mode of therapy that is most predictive of good outcomes but the quality of the therapeutic alliance. That feeling of connection and of being heard is central to a good therapeutic relationship. Second, what about peer support is so attractive? Is it the level of understanding, the connection with another person not tainted by a rigid hierarchy of education and medical degrees that makes it effective?

What about our current mental health model prevents us from getting the best of both situations? I know I need medication to keep my moods stable, but I also know that I need to be a partner in deciding what those medications are, and what levels of side effects are acceptable. So, I would not advocate for opting out of the medical model entirely (in my case anyway). I also know that I need the support of both a psychotherapist, to help me make sense of what I feel and experience, and of my peers, to make me feel less freakish and to put my experiences into proper context. I need to feel that I have a shared experience with a group in order to feel like there is a legitimate place for me in the world. I would say that all people need that. All three of these things are central to my recovery.

As for Andrea and the Kitten, we have all moved on to other stages of our recovery. For some reason, as we drew near to our discharge dates, the three of us bonded and we have maintained a relationship outside of the hospital. Most of these tight, intimate friendships don’t survive in the outside world, but ours has. We have, all three of us, had rocky roads since discharge. There have been re-admissions, relapses, bad nights and bad weeks. There have also been great triumphs, joy, silly fits of giggles, text messages and clever conversations on Facebook. We are all struggling to find a way to live, financially, productivity-wise and emotionally, and we all have very different levels of support. What is constant, though, is that we ask each other for advice, for support, for cheer-leading and for validation that we are not monsters. We deserve human kindness, and to a certain extent we find it from each other.