Weight

This depression feels like weight. It is some kind of lead blanket tied to the inside of my chest, pulling me down, crushing my organs. Maybe it’s supposed to protect me from cosmic xrays or something. Or maybe it just sucks. I can barely hold my head up. When I walk the heaviness pulls my shoulders down and I slump. I’m sure it’s wrecking my back, but I don’t feel like thinking about long-haul anything, so that’s nothing more than an idle thought to add to the pile of ways I am screwing up.

The suicidal ideation is back. I’m not actually suicidal, but I wish I could be. I wish I didn’t care so much about the people I would leave. My husband would be on his own in the world. My mother would die. Maybe not actually die, but some vital part would. I’ve already messed up enough, I can’t do those things too. So basically, there is no way out. There is no way to stop this.

I’ve had a bad cold for a couple of days, and some rational part of my brain is telling me that the depression is probably just an artifact of having been sick. That happens sometimes. But the parts of me that count, the cold, emotional, vicious parts, know it is not that. It is the manifestation of whatever it is in me that is rotten, decaying and harmful. So basically, lying to me, but I buy it. Why is it so much easier to believe that I’m a fundamentally damaged waste of time and space, than to accept that three days of fever and not being able to breathe through my nose have pushed my mood down?

A blogger I read says she has maybe 3-4 days a month where she really feels like she has her shit together, and is worthwhile. This is clearly not one of my days.

I’m suffocating under the weight of all the stillborn accomplishments, all the failed starts, all the disappointments and the let-downs. I’m crushed under the heaviness of my ineptitude and my inability to do anything with my life. The worst of it, is how ordinary and commonplace that sounds. I’m reduced to cliches about depression. I can’t even be miserable in any special way. I’m just depressed. There is nothing romantic, or tortured about it. Just a sucking pit, and a lead blanket to push me down into it.

I accept that most of what happens to me is chemical. I know my brain chemistry is the kind that punishes you for your wrong moves. I know my response to stress is not to take on the challenge and thrive. It’s more of a retreat and try not to take anyone else down with me thing. I am vulnerable to depression, in the same way that I am vulnerable to the highs that push me into overdrive, goad me into bad decisions, and exhaust everyone else. Knowing that doesn’t actually make anything any better though.

When I am a refugee, stranded on the couch, it doesn’t really matter that much where it comes from. What matters is that the effort to overcome the weight and get oxygen into my lungs is not something I am really interested in doing.

They don’t talk about this part much, the physicality of depression. They don’t really give you photocopied handouts to manage the feeling that your body is failing, that your limbs are so heavy, they might rip the skin and come free of your torso. When they say, pull yourself together, I imagine the ridiculous situation where I would be trying to pick up my unattached limbs from the floor, and somehow, without hands, graft them back on to me. I feel like my hands will leave dents in the table. I have them on the edge, trying to brace myself, so I won’t fall on the floor. The floor would be safer. You can’t fall off the floor, but I feel like the tonnes of me would leave a depression in the floor boards. Yeah, I know, physics. That isn’t actually going to happen, but some part of me is borderline delusional today, and so I can see it. I can see my lungs shrinking in capacity because of the blanket pushing down on them, and I can feel the skin around my shoulder tighten from holding the weight of my dying limbs.

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.

On side effects and choice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

spoiler {suicide} not me!

If this is a trigger for you: don’t read on

My friend called 2 nights ago, completely suicidal. Another friend and I tried to manage the situation, but yesterday we called 911. They came and got him, but he talked his way out of the hospital. He seems a bit better today, but the scare is not over by a long shot.

I am fine. I know how to cope with this kind of thing. I seem to be the go-to person in this kind of crisis. The problem is he made such a good argument it almost made sense.

Is it possible that this kind of illness is just inevitably fatal in some cases? Is there any way that a mentally ill person can make a rational decision to end their suffering like a cancer patient or someone with end-stage AIDS? Or is the wish to die mutually exclusive with reason? Not sure. At all. In any case, he was definitely too sick to be making this kind of decision yesterday.

How many years must you suffer before you can rationally say it is too much? I’ve been doing this for at least 20 years, he has been struggling for 7. I guess I have always known that if I could no longer manage, death would be an option. I think anyone who has been severely depressed has thought that. There is always a back door.

I am really well these days, but I know in the back of my mind that the self injurous behaviour and suicidal ideation is not that far off. It is almost comforting in times of stress to know I have a way out, or a way to manage the anxiety. I wonder if this is permanent? As if having thought about it once seriously, you will never be completly free of it. Not sure I would want to be.