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.

I’m furious, and broke

It’s not even the end of the month, and the non-paycheck isn’t stretching as much as it needs to. I need groceries, I need to pay hydro and I need to pay for dental work.

The part-time job I thought I had fell through, and I know I am not really in good enough shape to look for another one. This one was perfect, doing work for a company I have worked for in the past with people I already know, doing things I already know how to do. The thought of trying to find some other place to take me on terrifies me right now. The whole process of applying, interviewing and landing a job is scary all on its own, but the thought of having to learn new people, new places and new procedures seems daunting and more than a little overwhelming.

I don’t qualify for welfare, because my husband works, and I am too functional for disability support, pittance that it is. Disability support wouldn’t even cover our rent, and the cost of moving is prohibitive all on its own.

I’m angry. Seething actually, that an intelligent, well-educated woman can’t support herself. My depression and anxiety are stopping me from going out and getting a job, and I can’t get any other support. I am beating myself up for being so useless, but on an intellectual level I understand that this is not really my fault. Intellect isn’t all it’s cracked up to be on this one.

I could hit up my family, again, but the humiliation is more than I can handle at the moment, and they have already gone above and beyond for me. The financial support they have given me so that I can go to school is much appreciated, but it always comes with strings. No matter how well-meaning they are, ‘suggestions’ about how I should live my life, and what my priorities – or my husband’s priorities – should be are not helpful and they make me feel like a child. Feeling like a child is not really conducive to improving my self-esteem and confidence.

Almost everyone I know with mental health issues is broke, close to broke, in debt or barely making it. Financial stability or at least some measure of security is important. Financial stress is one of the strongest influences on my mental health, and from my experience it is that way for most people. How is it that I am expected to be building myself up, strengthening my psyche and getting well while at the same time trying to figure out if I can afford milk?

I need a job to get better, but I need to be better to get a job. How is this going to work out? It’s not like I want the state to support me in a luxurious lifestyle. I’m not looking for a holiday, or a new outfit. I just want there to be some sort of short-term system that I can tap into for a few months to keep things going until I can get my act together. Medical EI? Yeah, that only works if you have been paying into it for a certain number of weeks, and my last job was contract so it doesn’t count. Catastrophic insurance? Also not an option, I don’t have any. No insurance company will cover me for anything related to my mental health because I have a pre-existing condition.

I know this is a lot of complaining, but realistically I am not alone in this. I see this happening over and over again to people I know. Poverty is a significant contributing factor in mental illness.

From The Canadian Mental Health Association (Ontario)

“For persons who are poor and predisposed to mental illness, losing stabilizing resources, such as income, employment, and housing, for an extended period of time can increase the risk factors for mental illness or relapse.”

We are so focused, in North America, on individuality, on personal responsibility, that we are putting people like me at risk of relapse. Relapse, for me, means possible hospitalization and that, as I have said before, is really expensive. Even beyond mental health issues we seem to be unable to focus on prevention.

We would rather punish people after they have committed a crime than put social supports in place to reduce the things, like poverty for example, that breed crime. We seem to be willing to risk the life and health of citizens to avoid paying for preventative programs. The mayor of Canada’s largest city just voted to refuse $300,000 in free federal funding to support at-risk kids. This in the same week as a gang-related shooting in a major mall that killed two people and injured several innocent bystanders.

We starve the system of support for seniors to the point where they can’t afford to stay in their homes and end up in long-term care or hospitals. Both are very expensive when compared to personal support workers and home care. That is not even taking into account the quality of life issues that arise when you hospitalize someone who would rather live out their life at home, or even in hospice. We don’t even have a system for supporting families that are trying to care for their aging parents and grandparents.

Other jurisdictions, including places like Germany and Sweden, have a philosophy of preventative intervention, of acting to prevent crises and expensive acute care or incarceration. Of course they are, gasp, more socialist and, double gasp, European, but really do I care what we call it if people get what they need? Sure Europe is in a financial mess right now, but not all of it is due to an out-of-control health care system, and Sweden and Germany are doing pretty well all things considered.

Out of personal interest I would like some income support, to get me through this rough part, to keep me from losing my marbles trying to feed myself. I would like it if disability support were not based exclusively on the premise that you will not recover, and if it were enough to raise a person above (or at least to) the poverty line. At a community level, though, I want more support for the vulnerable before they end up in crisis, not just out of self-interest, and not just for reasons of social justice (although that should count for a great deal). We can’t afford the health care system, the welfare system and the corrections system as they are set up now. You hear it in every budget speech, in every ‘austerity’ program proposed. If the system is broken – fix it! Look for lower cost alternatives like preventative measures, supportive measures, things that will allow people to get into, or get back into the work force. Don’t make us suffer to the point where we get acutely ill, or get into a gang, or end up in long-term care. That costs way too much in money and in human suffering.

Invest in people a little. Put some money into the system, up front, and in a smart way. It will pay off long term.

I’m hoping some person I helped out in the past will turn out to be fabulously wealthy, hate all their relatives and leave me their vast fortune. Realistically, it’s more likely than winning the lottery. I’m a nice person and have helped a whole bunch of people out over the years. Hey, it could happen!

Some of it will go to groceries, for sure. I would, however, spend a lot of it supporting people like me that just need a few months of cash to keep the roof over their heads while they figure out how to move forward. Yeah, I’m really hoping that little old lady who fell down the stairs in 1989 has a vast fortune, and an ungrateful nephew who is just out for her millions. I’m still hoping the people of Ontario and our elected representatives will wake the hell up and shake up their priorities, but given my level of pessimism right now a wealthy widow is looking like my best option. Sad.

A Sappy Title Like: Looking for Meaning

I think all people wrestle, at some point, with the question “what does my life mean?”. I think we all look for meaning, for purpose, to give us some reason to get up in the morning. For whatever reason I am stuck on this question this morning (all right, I’ll be reasonable, it is definitely afternoon at this point).

I have been ill, or crazy, or disturbed for over 25 years. In that time I have been spectacularly successful at some things, like education, and spectacularly unsuccessful at others, like making a living. It is a real effort to keep struggling and fighting to get to the bottom rung of the ladder, financially and in terms of independence. I don’t have a career, that mark of “making it” that my family is so desperate for me to have. I am 40 and not off the family payroll. You can say it is not all about money, but let’s be realistic. Money is the way we measure ourselves, it is how we provide food, shelter, clothing and much of our entertainment. It is the reward our society gives for being successful in the working world.

I would like to have money. No, scratch that. I would like to earn money. I would like to be part of that world that supports themselves through work, through producing, through creating. I would like to be free of the influence of my funders – much as I love and respect them. I would like to feel that my work is valued, and in turn get value out of it. I selfishly want to take a vacation. I want to go somewhere nice and do fun things, maybe get some sun during a hellish February, or maybe see cathedrals in Cologne. I want to introduce my husband to the countries in Europe where my relatives live, and where I spent time as a child. But, this is impossible because I can’t make enough money to pay my rent, let alone afford airfare.

The travel thing is not the hill I want to die on, really. I think I can live a full life without seeing Havana. What it is is a symptom of the deprivation that chronic illness enforces, and particularly chronic mental illness. This inability to earn cuts me off from enjoying the things that my friends take for granted. Holidays, the symphony, conferences, dinners out, buying presents for milestone birthdays, updating my computer and paying my rent. Sure there are lots of low-cost things I can do. If I could get over my guilt at not working I would rock the staycation. The long and the short of it is though, that my illness keeps me impoverished and dependent, and this eats away at my search for meaning.

I don’t have choice, which is essential for feeling like you are in control of your life. Feeling like you can go in any direction you need to to fulfill your needs, wants and wishes is essential for feeling that your life has purpose. It means that you can act out on the choices that you and your brain make about how to live, what causes to support and the way in which your work can support your ideals and beliefs. You can choose to become an engineer and design tools to make other people’s lives more interesting, or that contribute to the economy of your region or country. Or maybe, being an engineer is enough in and of itself because it exercises your intellect in a way that makes you feel accomplished. Maybe it allows you to go home at night feeling like you have done something meaningful with your life.

I tried being a teacher for a while. This was a spectacular failure, for two reasons. First, I’m not really good at it. I don’t have the patience to shepherd 28 seven year olds through arithmetic. Oh, I provided a nurturing environment, and my kids felt cared for and important, which I am sure contributed to their development in a positive way, but in all honesty I can’t spell and I hate arithmetic. This tends to dampen your enthusiasm for teaching phonics and basic addition. I’m sure it showed. Second, I can’t handle the stress. Teaching children is possibly the most stressful job in the universe (a little over the top, but seriously ask a teacher and be prepared for a rant about being overworked and under appreciated). There is the whole issue of trying to manage a room full of children who have not yet learned to manage their emotions and behaviours, and then there are the administrative expectations of schools, boards, and your elected overlords. That doesn’t even factor in the parents. I was attacked by a parent once for calling children’s aid after they beat their child with a coat hanger. Fun times.

When you are a little unhinged at the best of times, the stress of teaching will invariably push you over the edge. I ended up on sick leave at least twice, and had to leave teaching all together this year. So I can scratch that one off my list of possible sources of income, contribution to society and meaning. It also means that the years I spent training as a teacher are pretty much in the dustbin as far as preparing for my future goes.

I also took a run at being an anthropologist. I started a Masters degree in Physical Anthropology in 1996. I loved it. I loved the bones and the study of evolution. I was going to analyze the efficacy of a particular computer program for divining the degrees of relationship between species represented by fossils. It all looked good. But then I got sick, and the shame of being crazy and the guilt for having abandoned my supervisor got to me. I spent months trying to recover and trying to psych myself up to go back, but in the end I couldn’t face my professors because I had been so weak, and failed them so badly. Of course, now I can see that I wasn’t weak, and that they would have welcomed me back (well, there was a chance anyway), but at the time the internal stigma that I have absorbed from living in modern western society overwhelmed me. I bailed on the degree, and on any chance at feeling like I was following my dream.

So, for those of you playing along at home I have now lost the solid dependable career with good benefits and a pension, and the more risky career in the field that I loved. I have also had minor jobs here and there that fell apart for a variety of reasons, companies went out of business, my job was no longer needed, things that were not my fault. But what it all adds up to is the fact that I have failed utterly to create a way for me to participate fully in the working life of my society. This is not the only way to create meaning, but it is a big one.

So what do I do now? I have little part-time contracts here and there, that don’t use my skills and don’t pay very much. I spend time with my friends and my family. I read the newspaper and get outraged at the state of the country. I get indignant about how the crazy folk are treated in this world. I spend a lot of time alone, trying to figure out what to do next. The obvious thing is to finish my degree in the spring of next year. The thing with that is I’m not sure where that will lead me. Will I be able to find a job anywhere that will let me work part-time, when I am not crazy, and not fire me if I can’t come in to work for a week?

I floated the idea with my family of doing a doctorate. That did not go over well. They need me to start earning my keep, and plunging back into the financial black hole that is higher education does not fit with their world view. I think doing research and maybe teaching adults would be a good fit for me. I would love to investigate things like identity formation in online communities, but it would appear that that is completely out of my reach. Scratch that off the list as well.

So can I create enough meaning in my life working at some part-time admin job, or trying to cobble together enough short-term contracts to support myself? Can I be happy with being a good friend and trying to be politically active on the internet? At this point I have no idea. All I know is at 4am when anxiety wakes me up and it is dark and lonely I feel that there is precious little meaning in my life. I feel like what I have to contribute is not really valued, and that the great wider world is not interested in making accommodations for my disability so that I can give what I am able. I am still sick right now, and I recognize that tends to favour pessimism and dark thoughts, but honestly I’m having a hard time clinging to the shreds of my self-esteem as it is. I don’t need the world telling me that I am not “pulling my weight” or “contributing” if I am sitting at home being crazy.

The search for meaning is universal. It spawns religion, academia, science, wars and art. I’m not looking to become enlightened and find the one truth that will reveal the secrets of the cosmos. I’m looking for a reason to get out of my apartment once in a while and to feel like I have a purpose beyond staying alive to prevent my relatives and friends from grieving. The world is stacked against the mentally ill in this regard. Many of us can’t make a living the way mentally healthy people can, and we don’t get the sympathy and understanding that cancer patients get. For the record, I have nothing against people living with cancer. It is a horrible and sometime chronic set of illnesses that can render a person disabled and non-functional. I am glad that people with cancer get the sympathy, understanding and support that they do. I just wish I could get it too.

It can be pretty disheartening. I think, ultimately, the meaning in my life will come from a patchwork of friendships, advocacy and maybe a bit of writing. I think I have to give up on travel, having the financial freedom to follow my interests, and paying my rent, in terms of feeling like a worthwhile human being. Overcoming the internal stigma we have been socialized to believe in means giving up traditional notions of meaning. I don’t want to sound shallow, it is not cool to say that you want money to make you feel worthwhile – although the people saying that usually have achieved a level of wealth where they can own a car and take a week off here and there. Money won’t buy you happiness, but it will buy food, office appropriate clothing and internet access. It is sort of a prerequisite for stability, and I think stability is what allows you to find meaning and happiness. Stability, unfortunately, is precisely what a person with Bipolar Disorder lacks.

So, what I can take from this ramble through my discontent, is that I will not find meaning until I can move away from traditional beliefs about what meaning is and where is comes from. Everyone has to find their own, I think my tribe just starts off lower on the ladder when it comes to this topic. I will be fine. I’ll figure something out, eventually. I am just tired of having to climb from greater depths to reach the place where everyone else seems to have started out.