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.

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.

A Multiplicity of Madness

There has been some debate on a mailing list I am on about madness/psychiatric survivors/medical model and the best or the ‘right’ way of managing mental illness/mental health issues. It can get very contentious, and some people are vehemently opposed to one school of thought or the other. This is what I wrote in response:
For me the level of disagreement in the mad community about what the best/most acceptable/most useful way of dealing with madness is actually a good thing. This community is not monolithic, we are diverse and multifaceted, just like the rest of the population.
No person comes to madness on the same path. For some there is trauma and abuse, for others there is a less defined on ramp. In my mind there is also a place for biological components in some people. In some people, madness just is, and there doesn’t need to be a cause.
For this reason there can be no right way to manage madness. No one therapy or pill or school of thought will be the panacea. If you want to be a mad psychologist then that is awesome. There are some good clinicians who get it, and are compassionate and effective.
Painting the whole mad community with one brush is what average people do to us. It doesn’t work, and in the worst case scenario it means that some avenues of treatment or support get minimized because they don’t fit the model of the moment.
In the activist community I sense some of the resistance to people choosing the medical path. I say if you are really for choice and personal control over your life you should respect all the choices people make. If something doesn’t work for you, it doesn’t mean it can’t work for anyone else.
Madness is complicated. The responses should be as well.