Blog for Mental Health 2014 Project, or, yes, I made it to the kitchen today.

bfmh14-copy-e1388959797718“I pledge my commitment to the Blog for Mental Health 2014 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.” 

There are pretty much 6 people who read this blog. Once you realize how long this post is, that may start to make sense.

When I started it, I just needed a place to write. I really needed a space, but I didn’t really need an audience. I get a little jump when someone comments, or I get an email saying that someone follows this, but this was primarily a little place for me, and I had no fancy paper notebooks to work with, and my handwriting sucks. Really, it does.

I wanted to write this post, as part of the Blog for Mental Health 2014 Project, because I think that while it is great that all sort of celebrities are announcing their mental health status, I don’t know that that really helps people on a day to day,  oh god how am I going to get all the way to the kitchen, I’m so tired my teeth hurt, basis. In my experience, the only thing that really does that, is knowing people who have lived through that, made it to the kitchen and lived to tell about it. Today, I made it to the kitchen. You can do this.

I was diagnosed with Bipolar II in 1992, after a not very successful trial of anti-depressants made it fairly obvious that I did not have unipolar depression. I spent 8 weeks in hospital getting used to lithium and also getting used to the fact that there was a name for the thing that caused me to lose my marbles on a fairly regular basis, and that that name was not just “tired” or “energetic”.

I spent my 20 year “crazy” anniversary in the hospital too. I’ve been hospitalized seven times in 20 years, which is pretty freaking low, given how things have gone. I have had good treatment, mediocre treatment, and downright horrible treatment. I had the best possible psychiatrist, but then she retired last year. I have taken at least one of almost every class of medication that has ever been even hinted at for BP, including one that is supposed to be for Parkinson’s Disease (that one, for the time being, is working).

I fought an uphill battle with self-harm. Mostly, I won. There are occasional skirmishes. I don’t beat myself over the head with them anymore.

I have significant kidney damage from medication, and it probably won’t get any better than this. I know where every public washroom in the entire city is located, and if I don’t know, I can find one. It is my superpower.

I wrote cranky blog posts about things I found completely unfair about living with mental illness, days when I really wished I could shuffle off this mortal coil without disturbing anyone, and things that are awesome (like peer support and friends).

In and between all of that, I did the following:

  • Got bachelors degree in physical anthropology and human evolution
  • Got college diploma in Early Childhood Education
  • Got bachelor of Education degree
  • Taught elementary school for 8 years
  • Got master of Educational Technology degree
  • Got married
  • Worked for an educational company designing online courses
  • Gave lectures to mental health professionals about lived experience
  • Got unemployed
  • Made really good friends in the physical world and online
  • Learned cross stitch
  • Knit a whole bunch of socks

(Resume available on request. I really need a job, just in case you were wondering. I’m not really trying to advertise.)

Being bipolar is not all of what I am, but it is a huge part of how I became this person. This has been with me my whole life, and it has shaped every decision I have made, and influenced all of my choices. I learned (slowly, and with great reluctance) how to be self-reflective. I learned compassion. That was supposed to apply to me too, but I have not quite got the hang of that yet. Further updates as events warrant. I learned that not only do I have a voice, but I really want to use it. I learned how to be kind. Again, not so much to myself, but I have to leave some startling growth spurts for my 40’s, right?

I also learned how incredibly cruel ignorance is, and how ignorant people really are. I learned what it is like to be marginalized and humiliated for something that is beyond your control. I learned how privileged I am to be a white, well-educated woman, from the right kind of family, when I interact with the mental health system. I learned how dangerous it is to be part of a minority against whom it is still socially acceptable to discriminate. I learned that stigma is a Human Resources issue, and discrimination is a Legal Department issue. I learned that fighting stigma is probably a good thing, but that fighting discrimination and harassment is more important. I learned that people change their behaviour when they have to, and not because you have a good argument.

Other Things I learned:

  • The whole “baby steps” thing is infuriating, but sometimes it actually works.
  • If you can’t get out of bed, put one foot on the floor. Then, if you drag it back under the covers, at least you can say you accomplished something.
  • Practice forgiveness, not in a religious way, but in a “I can let go of this thing I am beating myself over the head with today” way. It is liberating
  • Accept help. No one is so awful that they don’t deserve help. There is no way you are that undeserving, no one is. Humans are worthy, just because.
  • One of my favourite quotes is from Jenny Lawson (the Bloggess, read it. No, really read this blog, and also read Hyperbole and a Half). She says depression lies, and she is right.

Things I like:

  • online virtual worlds
  • Science fiction
  • DBT (Dialectical Behaviour Therapy)
  • coffee (not the best thing for someone with an anxiety disorder, but there’s decaf, and that doesn’t suck as much as you would think)
  • Twitter
  • Politics
  • My cats

Things I know now:

  • I’m a pretty decent person
  • I can be useful
  • Panic can only last so long
  • I am 100% successful at not dying so far

If you made it this far in the post, I am truly impressed, and a little bit grateful (ok, a lot grateful). This is not something that people can do alone, and having someone read what you write is both scary and empowering. The Blog for Mental Health 2014 Project is incredibly important in that respect, and I hope that you go and read a whole bunch of stuff that people have written, and scare and empower them.

Oh hey stigma, wasn’t expecting to see you there.

You know, I’m pretty lucky. I’ve surrounded myself with people who get me, more or less, and people that have learned from being around me. I have a decent little support network of friends and family who treat me like a human being, and who see me as more than the bipolar girl. In some ways, I’m isolated by their support from the worst of the stigma, and the worst of the discrimination that comes with being mentally ill.

I get it when I apply to jobs, and my spotty resume won’t get me in the door, and I get it in doctors’ offices when their whole tone changes once they see my list of meds. I once went in for a breast lump, and the doctor was all sympathetic and calming. He spoke quietly to me, and said we would figure out what was going on, and that even in the worst case scenario there was a lot that could be done, so don’t panic. Then he saw my meds. Suddenly he changed his tune. I was probably overreacting, you know because crazy people feel breast lumps differently (apparently). He made me feel like I was wasting his time, and I had probably made the whole thing worse by – and I quote – poking at it too much. Tell me that any woman who finds a lump in her breast isn’t going to poke away at that sucker? Turns out it was a blocked duct, but I was humiliated and angered by his behaviour toward me.

So what was the point of this? Oh, right.

I went to a business meeting today. It was a little stressful, because there is scope creep already in the project, and we haven’t even really started yet. The project, which was small and manageable, has been taken over by people with agendas of their own, and, well, that is always a little stressful. Nothing I can’t cope with, to be fair.

So we were discussing the nature of the business, and this is the conversation that happened:

1: So I’d hate to have a bipolar client, you know, and send them back to work, and have them not take their meds or something and then have them kill someone. You really have to have someone handle them that knows what they are doing.

2: Yeah, absolutely. I would hate to have a bipolar teacher working for me (laughs). That would be awful.

1: God, that would be a nightmare

2: For sure.

There are a couple of really obvious things wrong with this conversation. First, um, you do have a bipolar teacher working with you. That would be me. Second, we are not really very likely to run off and kill someone. Research, and common sense, say that bipolar people are a lot more likely to either be killed, or maybe, worst case scenario, kill themselves. So there’s that bit of brain-numbingly wrong thinking. The other thing, is that these people are talking about a program to educate professionals in dealing with people on disability, for physical and psychological reasons. I’m not really wild about them being in charge of the education of professionals if that is what they really think about people like me, and honestly, I wonder what else they are thinking.

I was going to say something, something non-identifying but clear, but thought better of it. The last thing I want to do is be out to people like this. I need the work, and I can imagine all the strange and insidious things that would inevitably lead to my not getting the contract, or that my role would gradually be phased out. I’ve been hidden about who I am at work before, and while it is a bit soul-crushing, I can do it. If it gets to be a pattern, I may end up opening my big mouth, but I’m going to have to prove my worth to them first, or get so far into the project that they can’t do it without me before I take a risk like that. Yeah, that’s what I’ll tell myself.

I forget how pervasive the stigma of mental illness is sometimes. I forget how dangerous it is. I forget that many mental health and disability specialists think we are all on the verge of forgetting one pill and then going on a rampage. I forget because my life is protected, and then it rears up and hits me in the face at a meeting of educated, privileged, socially responsible women.

To her credit, my boss, who has known me my whole life, looked like she was going to kill someone, but she bit her tongue, because she didn’t want to risk outing me. She wrote me a very wonderful email from the other side of the room (smartphones have some serious advantages). She was shocked, but after the original sting was gone, I realized I actually wasn’t. This is much more representative of how people see individuals like me. I had just forgotten, safe in my little bubble of people who see me as I really am.

I have the choice to be hidden. I have the option of avoiding stigma at business functions because, these days, I can pass for a sane person. I can quickly suck back an anti-anxiety med and get through any stressful business meeting. I can put on grown-up woman clothes and hoist my laptop on my back, and go off and play normal person for as long as I need to. I’m very privileged that way these days. The meds are doing what they are supposed to, the therapy is working, and for the most part, I am just living my life.

There are a lot of people who can’t get away with what I get away with. There are people who can’t pull their act together right now, and can’t put on a happy face and go to a stupid meeting. Not because they are any different from me, but because they are at a different point in their recovery, or they are deep in a messy place, or a dark hole. I’ve been that person too. For them, the stigma, the misconceptions, the ignorance and the flat-out hatred and contempt, are pretty life threatening.

Being seen as an inherently violent person, or someone for whom dangerous crazy is just one pill below the surface, puts you at risk. People call the police. The police overreact. People get incarcerated, formed, and sometimes shot. It sounds like hyperbole, but once you have people in authority who assume you are a physical threat, anything can happen. In my city, there have been a string of mentally ill people shot to death by the police in the past few years, and most recently, a disturbed teen armed with a pen knife was reportedly shot 8 times, and then tasered, on a streetcar. In the same time period, a sane man, armed with a loaded gun was disarmed by the police, and lived to tell about it. The stigma surrounding the disturbed, the mentally ill, and the generally unhinged, is not something that just makes life a little more difficult.

So maybe I should have said something in the meeting. Maybe my fear of being outed, my fear of losing a contract, was cowardly. I’m not really sure. Maybe I let an opportunity to change someone’s mind slip past me, out of fear. Maybe the stigma actually prevented me from doing the right thing. Maybe those people, at that meeting, will continue to blindly wander about in their ignorance. Maybe one of them will fire a mentally ill person, on some trumped up charge. Maybe one of them will not invite a relative to a gathering, because there will be children there, and you can never know what those people will do. I don’t know.

All I know for sure, is that I was unprepared to deal with stigma in that meeting. I wasn’t expecting it. I had this false sense that people who work in human services know something. I was wrong. I should have expected it. I let down the team. It won’t happen again.

Damn. {spoiler} SI

You know those days? I mean the ones that get away from you. You have plans, you have obligations, maybe you are supposed to meet someone for dinner, maybe you just have work to do, or a blog thingy to write. Best laid plans, eh?

So, a couple of days ago I was sitting on the couch. It was early, since I don’t really sleep much past 5, and my husband had already left for the early shift. (Why does this stuff always happen in the semi-dark?) I was fine. Fine. Fine. And then suddenly, I wasn’t.

To be fair, it has been a rough few weeks. I barely have any work, and my husband was off work for a bit with a dislocated shoulder. There was one week where we had $7, and half a carton of milk. That was a little dicey. There were acres of time, and nothing to fill them with, sitting next to an empty fridge and half a bag of cat food.

But back to the couch.

Suddenly, without any real warning, all of the little lies that mental illness tells you wormed their way out of whatever corner of my brain they hide in when I’m well. Sort of like herpes simplex B viruses that lurk until you get a sunburn, and then wham, cold sore, but with more consequences. The speed at which I went from placid, dull stream, to angry, anxious tidal wave, was a little overwhelming.

I tried all of my coping stuff – sort of. The breathing, the talking to myself, but all of that is hard when you are shaking and crying and you pretty much feel like you deserve to be that miserable so why try to fight it?

The rest of the day was a write-off.

Being the good little mental patient I am, I took the benzo I’m supposed to take when I can’t calm myself down. The idea is the benzo will help the situation from escalating to the point where I have a panic attack or crash in a really bad way. This usually works, but there was a bit of a problem. My fascination with sharp objects was sort of back. I couldn’t stop thinking about them. Bits of glass. Sigh.

I was really good when I moved. I threw out all my stuff. All the little chips of glass , the broken bits of plastic and all the rest of the sharp things. I was proud of myself. Unfortunately, I was really unhappy about that now.

Ultimately I found something, and I did a bit of damage. Nothing major. No wound management. Just a smear of polysporin, and a whole lot of explaining when my husband got home. The trouble is, the damn thing works. The anxiety basically vanished. What the hell. How did I end up here again? No wearing a bathing suit in front of my normal friends for a few weeks for me.

So here’s what happened.

The benzo is dis-inhibiting. It can be sort of like being drunk. Sometimes I just sleep, but when my thoughts are really swirling around sharp things, it can get dangerous. The last thing I need when I am fighting something like self-injury is a hit to my decision-making abilities, and I had kind of forgotten that.

The benzos work really well for anxiety, I don’t want to totally knock them, but when you are working with dodgy safety issues, lowering you inhibitions is not really something you want to be messing around with.

So I fell off the wagon, and I’m not really happy about it. I’m trying to figure out if this is a giant red flag, flying on a pole over my couch, or if it was just a really bad day, and some iffy decision-making. I’m not really sure yet. On the one hand, I’ve blown 2 years of good behaviour, but on the other, that two years came from not beating myself up over slip ups, and not spending a lot of time promising myself I would never do it again. Taking that pressure off has been really good for me, but I could feel the shame/berating myself thing creeping back later in the day.

I think I’m ok. I’ve poked and prodded my brain over the last few days, and nothing is leaking out. I’ve had some horrific dysmenorrhea the last couple of months, and that always feels like bone-crushing depression, but all the other signs are good. I think I just have to chalk this up to a bit of not paying attention, and a higher level of anxiety than I’ve had in a while.

I’m in one of those phases where everyone is telling me how fabulously I’m doing, and how all the troubles are behind me, but you know what? They never are. I can have months, or years of really good, stable times, but if I let my concentration go, if I stop paying really close attention, it gets away from me. You can question whether mental illness is a biological entity, or a social construct, or some cool, unique feature of my personality that makes me creative and special, but when it comes down to it, it doesn’t matter.

In the semi-dark, when it’s just me and the cats and my thoughts, it still behaves like a chronic illness. I still have to deal with it every day. It doesn’t go away, and when I pretend that it has, it sneaks up on me. The lying, cheating beast that is mine slinks up to my ear and whispers the litany of all the horrible things I’ve ever done, and all the people I’ve ever hurt, and all the things that will always be wrong. Even though some part of me knows it isn’t really true, and that I’m not evil incarnate, I buy it.

So I need to be more careful. I need to get more sleep, and I need to deal with the stress in my life. The risk of thinking that everything is ok is not really one I should be taking. Recovery doesn’t mean you can leave mental illness behind you. It just means you figure out how to continue living with that particular piece of luggage on your rack.

Oh, and I didn’t make it to dinner. Sorry.

On Thumb-sucking, Security Blankets and Trusting Myself Again

It has been a year and a half since I was discharged from the hospital. I still struggle with keeping my feet under me, but for new reasons. I’m not depressed, I’m not battling crippling anxiety, and I have not had to fight off mixed episodes or general craziness for a while. It’s been pretty good, from that perspective.

The real problems are things I am less familiar with. I need a job. I need some direction. I need more sleep. I need to get the physical issues under control.

The medical stuff is sort of crazy related. The kidney damage from the meds means that I have to drink a lot of fluids. That seems to have antagonized my bladder, and now I can’t sleep for more than an hour or so without having to get up. I’m sort of getting used to the sleep deprivation, but it makes everything else that much harder. But, I’m getting off track. This is not meant to be a whine about my aging, cranky body.

I do really need a job. I’ve applied to a whole host of jobs I am sort of qualified for. I have a newly minted masters in Educational Technology, and a few years experience in creating online courses for clients, but my resume is horrible. It is just a listing of all the things I either failed at, or failed to finish. It is a mess of jobs, a career I bailed on, and a collections of degrees that make me pretty interesting in conversation, but not the kind of person you would hire. I’m going to need to luck into something, I think. I have a line on some freelance contracts, and you hate to put all your eggs in one basket, but there are not a lot of baskets around at the moment.

I guess I need to find some way to sell myself, never my strong point. Part of the problem is that I’m not sure how much I believe in the product.

Every time I get sick there is a long road back to being ok. Part of the process is giving up the security blanket. I know how to be a sick person. I’m a pro. The people around me, the ones who love me and support me, know how to deal with a sick me too. We have a lot of practice, dealing with the sick girl. I know how to ask for help, for pity, for support, I know how to get what I need when that constitutes coddling and walking around me on eggshells. That sounds really bad, and it isn’t actually that awful. When I’m sick, I need help with really basic things, like laundry and groceries. I need someone to help me get my bills paid, and to tell me to stop crying, and that I can do this. I really need cheerleaders to get me through when I have no faith. I need hand-holding, and reminders to eat and sleep. It is pretty hard on my husband, and my family, and I’m sure it does not endear me to my friends.

When I’ve been hospitalized, it usually comes as a huge relief to my husband. He can go to work without worrying that he will come home to my body. He knows I’ll be safe there, and he can relax a little, usually for the first time in months. Once I’m discharged the worry starts up again. There is always the questions of just how “better” I am. How long can I be left alone? Will I remember to eat, to sleep? Every bad day is a warning flag. Every bad mood is a potential disastrous slide down into a pit. Every night of bad sleep, or every ridiculously early morning, brings up questions of hypomania. If I am irritable, it is a bad sign. If I get angry, it could be the harbinger of doom. All the people in my life, including me, judge, evaluate, dissect, and categorized my moods, the things I say, and all the other indicators we can come up with. It is a pretty exhausting process, but for a while anyway, it sort of needs to happen.

When you come out of an episode, you are still really fragile. You are like the insect, newly moulted. The new skin, or the new exoskeleton, is soft, and offers very little protection. You need to keep wrapped up in the security blanket. You keep sucking your thumb, for comfort, and as a reminder that you are not yet whole.

Obviously, this can’t last. You need to give up on the protections and get out of your head and into the real world at some point, or the recovery stalls. The problem with this is trust. I have to trust myself. I have to start to believe that a bad day is just that – one day – and not the beginning of the end. This usually takes me a couple of months. It is slow, but I get there. The process is slowed down, though, by my well-meaning loved ones, my doctors and the world in general. They protect me, the keep pulling the blanket up to my chin, they dance around me like I was made of only slightly hardened jello. It is way too easy to buy into this.

This time I didn’t have a job to go back to. My job disappeared into the meltdown of the company I worked for. Every other time I have been working on getting my act back together I have had a job to go to. I’ve had responsibilities, and a place to show up at. This time it’s just me, and school, and school is done now. I have no external structure to rely on for a reality check, and so I have been relying on the people around me, and they don’t trust me.

Well, they trust me, they just don’t trust that I am healthy, or that I can handle adversity, or that I’m not teetering on the edge of disaster at all times. My problem is I tend to buy into this a little too easily. It makes me question myself, and, let’s be honest, it is too easy to give in to it. It enables me to stay sick, or stay fragile, longer than is really necessary. I get to figuratively limp around for a lot longer than I really deserve.

This time is has been worse. I was really sick for a lot longer than usual. I was hospitalized twice in one year, which has never happened before, and I scared the bejeezus out of the people around me. Hell, I scared me. Getting better was hindered by the fact that I wasn’t really sleeping well. I’m still not, not really. Plus, there was the problem of not really having anything to do. I was in no shape to job hunt, and I could barely put sentences together for school. It was a very long, slow process. I had a lot of little relapses, very bad weeks, and some rather dumb slip-ups. It has taken a year to get to the point where I could realistically do a full-time job. So now, I have to get rid of the security blanket.

I’m terrified. I’ve been protected and coddled for two years, and now I’m facing the prospect of just being fine, of giving up my special status, of being ok. I don’t think that I can adequately explain what it is like to give up on the fantasy that you are sick and fragile, or impaired. You lose your excuse for everything. You have to take full responsibility for everything. I know how spoiled that sounds, really I do. It is just that when I am sick, I really can’t do all this stuff. I really am disabled, impaired, or broken. There is just an invisible line that you cross, where one day you are weak and in danger, and the next you are doing ok, a contributing member of the world.

I’m at that point.

Wish me luck, but not too much. I need to get my act together on my own.

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.