I am going to attempt to make this useful, even though a large part of the focus of this article is to release frustration. I also hope that this will be of some help to others of you who may be suffering, despite your best efforts to get help for yourself.
I understand that not everyone who reads this article will live in my area. I am Canadian, and our federal government continues to cut funding for mental health programs, which means that the types of things that would be helpful to someone like me who suffers (‘suffer’ being the active word here) from various mental health diagnoses are falling through the cracks. There was an article in September 13, 2011 article of the Vancouver Courier, a local news publication, that cited an astonishing rate of crimes and suicides committed by people whose files had been closed prematurely by various mental health organizations, and that even attempts by police officers to refer offenders to agencies for drug and alcohol and other mental health support services have been ‘a failure’. The other numbers mentioned in the article are stunning and do, indeed, paint a bleak picture for Vancouver’s mentally ill, and I know that Vancouver is not alone in this. I suggest interested parties check out the article at http://www.vancourier.com/news/Report…/story.html.
The Truth Is…
So what does this mean for those of us who are not yet engaging in criminal activity to get our needs met? Let me use my own experience as a framework. I now understand that I have been struggling with mental illness since my age was a single-digit number. I remember being depressed, isolating, being consistently and easily disturbed and upset, having a distorted perception of the world and of other people’s treatment of me, feeling disconnected and generally unsafe, and unable to relate to other people my age, or any age for that matter. I developed disordered eating and eventually substance abuse issues, and was acting out in other ways to garner attention for myself. Around the age of fifteen, I gave myself alcohol poisoning and nearly died. That same year or the year before (the dates are a little fuzzy for me) I carved a cross on my arm that ran the entire length of my forearm. Somebody in my class saw it in gym when I was changing and reported it to one of the guidance counselors, who called my mother. She simply asked about it when I got home, and I don’t remember there being any follow-up on the state of my mental health.
A teacher asked me once, when I stopped coming to his class in the morning, if there were problems at home. I remember being angry at him and thinking, What an asshole, prying in my life, making assumptions about me. I didn’t realize that there were problems at home. I didn’t know what problems at home were. I didn’t know much of anything because so many of the people I grew up with had similar conditions, so it never occurred to me to question anything. I didn’t realize that not only was the overall climate dysfunctional, but on top of that multiple family members were dealing with mental health issues. I bottomed out at the age of seventeen – a few months after my high school graduation. Despite a history of mental illness in my family, and despite the fact that my dad has struggled throughout his own life with most of what I currently experience, no family history was mentioned to me. Nobody helped me. I was alone, and had to struggle through it on my own despite debilitating and terrifying symptoms that took years, active disordered eating, cutting, isolation and eventual relapse with drugs and alcohol to escape from.
I have had another episode that started up just over two years ago and has been more or less dominating my life ever since. This time I have stayed sober – don’t ask me how – and have managed to avoid cutting. Despite frequent suicidal ideation, I have managed to avoid self harm, though again I’m not really sure how. The first time I went through all of this, I lived in a teeny-tiny town, population 1200, and though they had a medical center there was nothing in the way of mental health services. They had a counselor in town whose specialty was crisis planning, but she took me on briefly. I would end up seeing her on and off between the ages of eighteen and twenty seven, and she helped me navigate many crises: pregnancy and deciding to become a birth mother, addiction, and seeking safety despite ongoing crisis and dysfunction. During my first episode of panic disorder, at age eighteen, I went to the clinic weekly, and sometimes multiple times a week. I had difficulty breathing, and so I had them test my lung capacity over and over. They kept sending me home, telling me there was nothing wrong. Nobody suggested mental health issues. Nobody suggested anything.
Ding Ding, Round Two
This time, I have the somewhat dubious advantage of having experienced this before. Despite a few symptomatic differences, it is exactly the same as before. Now I live in a city which, including the surrounding urban areas, totals some three million residents. There are several hospitals, community mental health agencies, addiction recovery resources, and pretty much anything else a person can think of in terms of access. Yet, despite all of this, my journey is still largely a solo endeavor. Since I can form two sentences, put them back to back, and have them make sense to most people, I am not what they consider ‘high risk’. I have been to the hospital twice in as many years and would probably go more often if my attempts didn’t end in me being subject to subsequent triggering interviews, only to be turned back out on the street with the reassurance that there’s nothing wrong with me. Psychiatrists, counselors and other professionals advise me to get a mental health team, and to get hooked in with my local community mental health center, yet every time I actually get past the telephone intake session (which, to date, has happened a grand total of once) they make sure I’m following up on the things the last person suggested and then close my file with a resounding chorus of ‘Oh you’re fine, you’re strong, keep up the good work’.
To writ, a summary of what I encounter on any given day:
-I dissociate from reality at a frequency that shifts perceptibly, but I can spend months completely dissociated from reality. Nothing looks or feels real, no matter how long it has been a part of my life. Also, everything is alarming, frightening, and severely overwhelming. Pair this with the fact that things like environmental and social activism are extremely important to me on a good day, and presto: instant nightmare. The world is constantly a black, scary, loud place that is devouring me.
-vivid, violent, often gruesome images and urges about causing harm to self and others. This includes feeling like I’m going to jump off the balcony every time I visit a friend who lives on the sixteenth floor of her balcony. Walking across a bridge presents a problem for the same reason. When I was still somewhat capable of holding down a job, I would have to keep my pens put away because I would often experience the urge to stab my supervisor, who sat directly beside me. I can go on and on, but these are the main ones. Needless to say, I don’t trust myself alone with children, animals, or even adults at times, and so end up isolating a lot.
-the persistent belief that nothing really matters, and nothing is worth fighting for. This doesn’t make my life as easy as I feel it should. In fact, it causes me an undue amount of stress and heartache because inside of me dwells an idealist and optimist who wants to believe that the world is a beautiful place full of hope. Right now, though I am able to still connect to that belief at times, it is increasingly out of my grasp.
-existential panic. I have no idea why I’m here, or what I’m here for. Again, this isn’t a liberating realization. This is terrifying and all-consuming.
The capacity in which I experience each of these varies day to day, and are peppered with other fun things like my ongoing eating disorder, thoughts of using, drinking, cutting, stealing, and self-harm, BPD coping traits, and constant counting, checking, and organizing. One thing that seems to be consistent is that the first few hours of my day are alright. I have enough clarity to do things like write, go for walks, and catch up with things I’ve fallen behind on. But for the most part, these things render me incapable of living my life to my fullest ability, or much of any ability at all. I have finally left work, as this all has progressed over the last two years. Apart from one therapy program – a CBT program for panic disorder – I have been unable to attain much of anything else. Recently spaces opened up for me in a DBT – dialectical behavioral therapy – group and at the CCD, or Centre for Concurrent Disorders, which treats people who experience both addiction issues and mental illness. But how did I navigate the two-year gap in between these things?
I am going to be honest. This article is not one full of magic answers and dripping with hope and insincerity. I live with mental illness. My life is agonizing on a regular basis. Despite living in a metropolis, I have had almost every door slammed in my face. In a dozen attempts, I have been unable thus far to find a medication that does anything other than exacerbate my symptoms. Now that I’m in the process of applying for disability, I have discovered that my psychiatrist doesn’t believe in having an opinion in whether I need financial assistance or not. He doesn’t want to be responsible for anything that happens should someone in the adjudication process decide to question his authority and his credibility. Friends and family also frequently present as challenges, since they don’t understand what’s happening with me and, let’s be honest, in some cases don’t even want to. Plus, my family just triggers the hell out of me, even when they’re trying to be helpful.
So…what do you do when nothing’s working? One thing that has been consistent for me is writing. The first time I experienced the episode of panic disorder that blew open my OCD and dissociative disorder, I couldn’t leave my bedroom for months (I experience agoraphobia with my panic disorder, so I’m a double winner). I found an empty book in a desk in the living room and it was beautiful, and began to journal seriously for the first time ever. I slowly worked my way up to going for walks – alone, in wooded areas – and stopping halfway to write. I also sat outside on my deck at night a lot, looking at the moon, studying her beauty and focusing on something that wasn’t the pain and degradation of mental illness. I slowly felt stronger, but again, eventually I took up other things because I really didn’t have anything else. All of my friends deserted me because I was no longer fun to be around, and my counselor was only available for a few short weeks at that time. I was still living with my family, so when I was at home I was sequestered away in a dark room. I avoided a lot of light and energy, and I now understand it’s because I am extremely sensitive to them.
This time around, writing has saved my ass again. Though I have mostly lost the ability to journal, I have found my solace in writing for this website. I also write essays for an online school I am attending, and enter contests when I can (some of them can be expensive, and hey, let’s face it, I am unemployed and can’t even rub two pennies together more often than not). In my case, my spiritual path is Pagan, and while I have lost a lot of connection to it for now, I find comfort in the Tarot. I have found that no matter what I do, patience is key, because I go through phases where I can’t do anything at all. When that is the case, I am online a lot, watching movies, on facebook, basically just doing things to distract myself. This is not a very productive way to go about life, but the thing is that, more often than not, this is all I can handle. My work is around being okay with this, or at least accepting it. I do not currently possess any other coping strategies for what I deal with. I hope it gets better, I really do.
Hands down the biggest piece of my sanity right now is a strong support group. I realize that this particular piece of information comes with a certain amount of privilege attached to it, as the first time this happened to me I was in a small town with limited resources and limited population. But, regardless of where you live, try to find a group of people who are there unconditionally and nonjudgmentally. Sometimes this will be family. It’s great if it is. However, for many of us, family is not a possibility. For many of us our families have caused us trauma and press our buttons faster than anyone else. My friends have become my chosen family. I surround myself with people who I can be myself with, and talk about anything with. This is extremely important for me to create a sense of safety for myself, and I will not negotiate with people. We have to be our own advocates much of the time, regardless of where we live or what we experience. This fact pisses me off a great deal of the time, but my feelings about it don’t make it any less true for me.
Online resources work for those of us who need extra support, specific support, live in remote areas, or cannot readily leave our immediate environments. I myself fit into most of these categories. Being able to access people physically is an obvious necessity, but sometimes this is not strictly possible. Facebook sometimes has support groups, and you can often find resources via Google search, though I suggest taking some of the findings with a grain of salt. Once upon a time, when I was getting started with the online search method, I found a lot of stuff that was geared more towards people who are affected by people with the diagnosis, not the actual people suffering from it, and some of the things they say can be hurtful. I advise not reading into it at any length if you wish to avoid this. Simply return to the search and keep looking.
I have had to supplement a lot of my psychiatrist’s information and referrals with my own research. There is a lot to be said for doing the work. Even if they are going to slam a particular door in my face, I don’t regret knowing that door existed in the first place. I have a curious combination of willingness, rage, bitterness, and hope that keeps me going in the face of all odds. This helps me greatly. Though I don’t always think I’m going to get what I need, I don’t ever doubt its existence, or the fact that one day I will find it somehow. I encourage the fostering of this or a similar mindset, as it stands the test of time.
Barring anything else, be prepared to get down and dirty. I have to exercise harm reduction in this area of my life. It’s been along, bumpy road for me, mostly overgrown and unrecognizable. My condition has deteriorated to the point where I don’t even recognize myself anymore. Everything triggers me. I am constantly surprised that I can do even basic things like tie my shoes or brush my teeth, let alone get out of bed in the morning and face the day. So far I am still sober, but I binge eat to deal with more painful anxiety and dissociation, and then usually beat myself up over it. That in itself is a vicious cycle. There isn’t a day that passes where I don’t feel like I should be hospitalized, but more often than not I find another way to get through it since I choose not to put myself through having to go relive it all and then be discharged from the emergency room only hours later, and traumatized.
What I tell myself is that whatever it takes to get me through crisis, I will do, because I have to. I am outside the realm of people being able to help me, or even being able to do the things I would like to be able to do for myself. That said, I currently choose to not destroy the things in my life that are important to me. I say this because, when living with mental illness, sometimes it is difficult, if not impossible, to hold onto the positive things. Sometimes we feel the need to make our outsides match our insides, if they don’t already. This can be one of the most difficult urges to resist, second only to harming ourselves or others. Do whatever you can to avoid acting out on these urges, even if it is only a lesser act. I mentioned before that I binge eat. There are things to this that are less attractive than I would like. The sugar and other things in the food raise my anxiety. Feeling full makes me feel anxious as well. Also, it causes financial strain and adds to feelings of guilt and sometimes shame. But when what I want to do is drink or drug, or take my life, perhaps eating isn’t so bad after all. This is what I say when I mean harm reduction. It is the act of choosing a less harmful action in the face of crisis when there is no optimal solution. I encourage anyone who is interested in this to learn more about it.
Finally, for those who are well enough to function in most areas of life and still take on commitments, it may be beneficial to you to start a support or social group for people in your community who are dealing with mental illness. You may choose to combine the two functions, and have it be a support group that also does things socially. Sometimes we have to create our own resources, and the benefit to doing this is that you won’t be restricted to the stigma, dogma and politics of the mental health system. True, it may not have the perceived stability of something run by professionals, but perhaps it is possible to get one or more on board with your idea, depending on where you live. That said, I have always found that, while there is a certain amount of safety in having professionals to be accountable to (for me, anyway), the people in my life who have truly gotten me through the thick of things are those who have no formal training, are not professional health workers, and probably wouldn’t even know what to do in a crisis. I think the important thing is to empower ourselves by giving our experience a voice, which is what we are able to do in a group of peers. I also find talking, talking, and talking some more, to anyone who will listen (well, it may not be the first thing I mention to anyone who isn’t a health professional, but you get the drift) helps me advocate for myself, and puts the word out there to others who may be struggling that I am one of them, and encourage dialogue.
Recovery meetings can be a source of support, especially for those who have addiction issues as well. There are meetings in most places, and meetings online. However, I have actually more or less stopped going to recovery meetings as I cannot listen to what people talk about. Up until two years ago, which was just at the three-year sobriety mark for me, my life was taking the shape of most others’ in recovery. Conditions were improving, relationships were improving, coping mechanisms were becoming healthier, and I was beginning to enjoy things I’d never had before. But on some level things were steadily declining as well. The longer I’d been sober, the more miserable I was, and I couldn’t figure out why. People gave me alternating advice: ‘You’re digging too deep’. ‘You need to surrender’. Finally my world blew apart and I understood that it was mental illness I was dealing with, uncensored. I find that when I go to recovery meetings, it helps me to feel safe if others there are living with mental illness. Thankfully I have access to a couple of special purpose 12-step groups that cater to people with mental and emotional disorders. I am also hoping the Center for Concurrent Disorders will be of some help.
Other things that help: music, laughter, getting out of the house, doing whatever little things I can to stay connected when I don’t feel it so much. Walking helps immensely. I go for long walks, in nature if possible, though that’s not as great a reality in the city. I can’t always travel as far as I would need to to get to a clean, clear space. But there are streets that have lots of trees, where the residents lead lives that are in close relationship with the Earth, and the energy is different in these places. During my last few weeks at work I walked to the office every morning down a particularly green street, an hour and a half each morning just to clear my head and feel like life was worth living. It worked, for four months. Dancing is a big thing for me as well. I get into my body and out of my head, and forget all about the suckage that is my situation and elevate myself to a new level.
When life is unbearable, I don’t delude myself into thinking I’ll get through it. I call someone or go to the hospital, because I have a history of suicide attempts. I know I can go there, and suspect I will again someday. When I feel like that, so far I have chosen to spend time with someone because I am far less likely to cause myself harm when others are around than I am when I am alone. It helps to have a safety plan.
I urge anyone in crisis who is having a hard time finding help managing their symptoms to explore areas of comfort and safety in whatever way you are able to. Self-forgiveness is a must, as much as possible. And don’t feel like you have to make excuses for yourself. So long as you are not directly causing harm to other people, your life is your own and you must live it in whatever way is going to help you most through these difficult times. The most harrowing part of my journey has been the loss of freedom and the struggle to grasp the limitations I experience now, after most of a lifetime of being able to do pretty much whatever I want without it triggering me into a psychotic episode. So my capacity for making excuses for myself and taking other people’s opinions on is considerable lower. Life is hard enough without carrying everyone else’s luggage.
Howell, Mike. ‘Report paints bleak picture of mentally ill in Vancouver’. Vancouver Courier, September 13, 2011.