The blog has been accepted into the Mental Health Writers’ Guild. I’m really happy to have joined an interesting group of people who are working towards making their voices heard in a positive way.
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.