Book review: Bipolar Me

Book cover: Bipolar Me

Bipolar Me by Janet Coburn explores her journey with bipolar II disorder.  The book is made up of blog posts, which are divided into chapters based on theme.  The chapters cover topics like the symptoms of bipolar disorder, the “med-go-round”, times of struggling, dealing with social situations, and broader societal issues.  Each post is pretty self-contained, so this grouping by topic feels very natural.

Janet explains that it took her a long time to be diagnosed with bipolar II because her hypomania tended to show up as anxiety.  It also took a long time for her to find the right medication.  She refers to spoon theory a number of times throughout the book to describe the effects of chronic mental illness, and she describes the extra energy expenditure associated with hypomania as borrowing extra spoons, which will need to be paid back later.

She writes about how treating her bipolar II disorder improved her concentration and as a result boosted her creativity and expanded the scope of her writing, which is interesting since the common perception is that mania increases creativity.  Still, she notes that she’s able to be more productive with her writing during hypomanic episodes.

The book includes tips for the newly diagnosed, and offers some work hacks to compensate for mental illness.  She lists the seven wonders of the bipolar world, starting with “I wonder if I can get out of bed today.”  She also gives a rundown of the various “natural” strategies that are supposed to help with depression but didn’t help her.

Janet brings a self-deprecating sense of humour to her writing.  She quips that “If catastrophizing were a power source, I could light up Chicago.”

Throughout the tone is wonderfully direct.  She describes herself as a crazy cat lady.  She calls BS on the saying “what doesn’t kill you makes you stronger.”  Taboo subjects like self-harm are openly addressed.  As for being open about her illness, she says “I’m not doing this because I’m brave. I’m doing it because I’m stubborn.”

The author also admits to self-doubt, writing: “Like many people with bipolar disorder I often have the sense that all along I was faking it, that during the periods when I seemed to be functioning best, I was pretending.”

The book addresses the financial toll that bipolar takes, and the author’s fight to get disability as well as insurance coverage.  She writes about how her illness impacted her ability to work outside of the home, something that a lot of readers will likely identify with.

Janet shares that she was bullied as a child.  She acknowledged that the bullying worsened the illness that she was already biologically predisposed to, wryly commenting: “It’s a wonder I’m not a spree killer today.”

This book offers very good insight into living with bipolar disorder, and it’s written in a conversational style, as though the author is speaking directly to the reader.  I continue to be impressed by the calibre of books being written by mental health bloggers.

Stigma is addressed throughout the book.  There is a chapter “Beware the Mental Health Meme”, in which she addresses inaccurate and supposedly inspirational memes circulating around the internet (e.g. “nature is the best therapist”) and includes comments on the matter by several other bloggers.  She also addresses the legal system’s treatment of mental illness, media reporting of scientific studies, and media suggestions in the media attributing tragic events to mental illness.

 

You can find Janet on her blog, Bipolar Me.

 

You can find my other book reviews here.

Have you checked out my first book, Psych Meds Made Simple: How & Why They Do What They Do?  It’s available on Amazon as an ebook or paperback.

 

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So you know… (S.Y.K.)

Revenge of Eye So You Know

Revenge of Eve

It’s another week in Revenge of Eve’s So You Know (S.Y.K.).  The focus for this week is mental health stigma.

This week’s questions are:

  1. Do you struggle with your mental health (ie. diagnosed)?
  2. What is the most aggravating misconception as it relates to your diagnosis?
  3. Is there a family history of mental illness within your immediate family?
  4. If you could change the stigma that surrounds mental illness, how would you go about doing so?
  5. Do you believe that maintaining our mental wellness will ever rank in importance with maintaining our physical health? Why or why not?

 

My answers:

  1. Do you struggle with your mental health (ie. diagnosed)?  I have a diagnosis of major depressive disorder.
  2. What is the most aggravating misconception as it relates to your diagnosis?   The idea that I’m depressed “about” something is pretty obnoxious.  But probably the most aggravation has come from employers who apply the usual stereotypes of dangerousness, unpredictability, and incompetence.
  3. Is there a family history of mental illness within your immediate family?  Nope.  The only mental illness in the family that I’m aware of is a great uncle with schizophrenia on my dad’s side of the family.
  4. If you could change the stigma that surrounds mental illness, how would you go about doing so?  I did a post not that long ago about researcher Patrick Corrigan’s book The Stigma Effect, and he said the research shows that having individual contact with “normal” people living with mental illness is the most effective way to combat stigma.  That means that we (or at least some of us), need to “come out” about living with mental illness.
  5. Do you believe that maintaining our mental wellness will ever rank in importance with maintaining our physical health? Why or why not?  No.  I’m not trying to be pessimistic, but maintenance of mental health is a pretty abstract concept, while maintenance of physical health is much easier to quantify.  Across the population I think concrete is likely to win out over abstract any day of the week.

 

About S.Y.K.:

  • There are no right or wrong answers… Your answers = Your opinion = Your life
  • Answer a few or one, whatever you are comfortable with
  • Pingback to any S.Y.K. post
  • Use the hashtag #SYK to tag your post
  • Be real.  If you feel a certain type of way, say it.  You were asked your opinion 😉 (double dog dare)

What is… anosognosia?

In this series, I dig a little deeper into the meaning of psychological terms.

This week’s term: anosognosia

I wouldn’t be surprised if you haven’t heard this term before, so let’s break it down.  Agnosia is an inability to recognize people or things.  Nosology is the classification of diseases.  Throw the two together, and you get anosognosia, which is a lack of self-awareness of one’s own disease/disorder.

Sometimes anosognosia can occur as a result of traumatic brain injury or some other form of physical damage like a stroke.  In this case it is treated as a neurological disorder.

Anosognosia is also used to describe a total lack of insight into mental illness.  It refers both to a lack of awareness that what one is experiencing is as a result of illness, and an inability to recognize that treatment could be beneficial.   Insight can exist on a continuum ranging from good to none (i.e. anosognosia), and it requires higher-level brain functions (particularly involving the prefrontal cortex) to properly self-evaluate.  In mental illness, sometimes those higher-level functions are impaired, reducing the individual’s capacity to recognize their own illness.

People with psychotic conditions such as schizophrenia are more likely to have a lack of insight. Poor insight is not uncommon in acute mania.  In depression, there may be a lack of insight if the person attributes what they are experiencing to being fundamentally a horrible human being.

Disagreeing with a diagnosis is not in and of itself a lack of insight.  Someone might recognize that they are experiencing symptoms of an illness, but disagree with their physician on what condition best accounts for those symptoms.  Someone with partial insight might recognize that they’ve had a decline in functioning, but have no idea what accounts for it.  Partial insight could also be manifested as awareness that certain symptoms are due to illness, but believing that other effects are not.  As an example, someone with schizophrenia might recognize that hallucinations are probably due to their illness, but remain firmly fixed in their belief that a delusional idea is reality-based.

Lack of insight related to the need for treatment isn’t the same as declining a particular form of treatment someone doesn’t wish to have, or deciding that the potential downsides outweigh the potential benefits.  It is more of an issue of the effects of the illness reducing one’s capacity to recognize that treatment would be helpful and reasonably consider the pros and cons.  This is where involuntary treatment may come into play.

There is a test called the Beck Cognitive Insight Scale, which I hadn’t previously heard of, that was developed to evaluate the extent to which people experiencing psychosis were able to integrate reality-oriented feedback about their delusions.  Some of the items on the 15-item scale are:

  • “My interpretations of my experiences are definitely right.”
  • “Some of the ideas I was certain were true turned out to be false.”
  • “If something feels right, it means that it is right.”
  • “I cannot trust other people’s opinion about my experiences.”
  • “If somebody points out that my beliefs are wrong, I am willing to consider it.”

While a standardized test might be helpful to quantify variations over time, in my work as a mental health nurse it’s usually fairly easy to determine the level of insight someone has without using any form of structured test.

With my own illness, I’ve generally had pretty good insight.  I haven’t aways agreed with treatment providers, but that has had more to do with my opinion of them than any lack of awareness of my symptoms.

What has your insight been like over the course of your illness?

 

Sources:

You can find the rest of my What Is series on my blog index.

psych meds made simple

 

My first book, Psych Meds Made Simple: How & Why They Do What They Do, is now available on Amazon as an ebook or paperback.  It’s everything you didn’t realize you wanted to know about medications!

Book review: What Is The Worst Case Scenario?

Book cover: What is the worse case scenario?

What Is the Worst Case Scenario? by Marie Abanga includes a foreword by mental health advocate and Olympian Amy Gamble. For anyone familiar with Marie’s blog, you will very much recognize her distinctive voice in this book.

Marie explains that writing this book was “my journey to a new me, a me who wants to keep facing and fighting fear, and also a me who wants to share with the world in all candidness.”  She shows her own evolution from FEAR as in Fold Everything And Run to instead Face Everything And Rise.

This memoir covers the birth of her sons, her marriage that turned out to be a sham, and her her own mental health challenges.  She shares that while pregnant with her third son things became so desperate that she picked up a knife and was ready to end her life.  It was feeling her son kicking inside her that saved her.

After her marriage ended, she left her sons at home in her native country of Cameroon and went to live in Belgium.  While living there she had to deal with the death of her brother as well as others stressors, and she became depressed and started having panic attacks.

She writes about the various fears she has had to tackle, including fear of failure, fear of love, and fear of being happy.

She explains that in Cameroon, mental illness tends to be attributed to “witchcraft, greed, or maybe a crazy lineage.”  Inspired in part by her brother’s experience of mental illness before his death, she chose to become a mental health advocate.  She writes: “Whenever I smell stigma, I spray more spirit on the open cut to burn it out and tell it to its darkness that I am an over-comer.”  She includes posts that other bloggers have shared about stigma.  Throughout the book there are also quotes included from various inspirational sources, including Maya Angelou.

This story captures Marie’s spirit and ability to persevere through adversity.  She has chosen to be vulnerable in sharing her story, and in doing so demonstrates how much strength there is in vulnerability.

 

You can find Marie on Marie Abanga’s Blog.

 

You can find my other book reviews here.

My first book, Psych Meds Made Simple: How & Why They Do What They Do, is available on Amazon as an ebook or paperback.

 

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What is… psychomotor retardation

In this series, I dig a little deeper into the meaning of psychological terms.

This week’s term: psychomotor retardation

Psychomotor retardation is one of the less common but more outwardly observable symptoms of depression, and is listed as one of the possible diagnostic criteria for a major depressive episode (in major depressive disorder, bipolar disorder, or schizoaffective disorder).  It involves a slowing of both thinking and physical movement, and often includes slowed speech with delayed responses and quiet volume.  Gaze tends to be fixed and eye contact is avoided.  Affect is often flat, meaning there is little to no facial expression of emotions.

These symptoms have been described as far back as ancient Greek times.

There is a standardized test to measure psychomotor retardation called the Salpêtrière Retardation Rating Scale.  It contains 14 items that measure walking, speed of movements in the limbs/trunk and head/neck, flow of speech, speech volume, shortness of verbal responses, limited spontaneous speech, easily fatigued, rumination, loss of interest, time perceived as painfully slow, and problems with memory and concentration.

The Motor Agitation and Retardation Scale is another test used to evaluate the extent of psychomotor retardation.  It considers abnormal gait, immobility of trunk and proximal limbs, postural collapse, slowing of movement, flat affect, downcast gaze, and speech that is soft and monotone, with delayed onset.

It’s not known exactly what causes this symptom, but it’s been suggested that changes in neural circuits in the prefrontal cortex may affect the basal ganglia, an area of the brain involved in regulating movement.  The neurotransmitter dopamine may play a role.  The hypothalamic-pituitary-adrenal axis, which connects the brain and the adrenal glands, has also been implicated.  There may also be reduced regional cerebral blood flow.

Psychomotor retardation is more common in the melancholic subtype of depression, and  also in depression with psychotic features.  One study found that a higher number of previous depressive episodes was associated with more severe psychomotor symptoms, particularly the cognitive aspects.  Electroconvulsive therapy (ECT) seems to be particularly helpful for this aspect of depression.

Slowed psychomotor activity has appeared off and on throughout the course of my illness.  It was particularly bad during my second hospitalization, which lasted two months.  As time has passed, though, there’s been a pattern of abrupt onset psychomotor retardation in response to major environmental stressors.  It generally starts when I wake up the day following the stressor, and tends to last a few weeks.  It’s always been something I’ve been quite aware of but have no control over.  I’ve come to conceptualize it as my brain’s way of trying to protect me from the world, because my thinking gets slowed down and my emotions are shoved off into a corner somewhere.

This was triggered again for me this past weekend after the stigmatized cluster-f*ck I experienced when I went into ER (twice) for physical reasons but they decided I was just a psych patient.  When I woke up the next morning, even walking to the bathroom was a challenge.  For me at least it’s not the same feeling as lack of energy; it’s more like my body is trying to resist the movement.  The rating scale described above mentions slowing of time; I don’t always experience that, but this time around it was pretty painful for a few days.  I didn’t feel like doing anything, even watching tv, and of course that made the time go by even slower.  Putting words together to speak out loud can be challenging.

Is psychomotor retardation a symptom you’ve experienced with your illness?  Have you noticed any patterns with it?

 

You can find the rest of my What Is series on my blog index.

Sources:

 

psych meds made simple

 

My first book, Psych Meds Made Simple: How & Why They Do What They Do, is now available on Amazon as an ebook or paperback.  It’s everything you didn’t realize you wanted to know about medications!

Should pharmaceutical advertising be banned?

In many countries, direct to consumer advertising (DTCA) of prescription drugs is either prohibited or tightly restricted.  The United States is a notable exception, along with New Zealand.  For tv ads, the standard pattern is to talk about the illness, talk about the amazing benefits of the drug, and then provide the required long list of side effects in an upbeat tone of voice while cheerful music plays and people are shown happily living their wonderful lives.  The ad closes with something along the lines of “ask you doctor if _____ is right for you”.  If you haven’t seen one of these ads before, there are a couple of examples at the end of this post.

Drug company marketing to health care providers is a related but distinct issue that’s deserving of its own post, so I’ll set it aside for the sake of this post and focus solely on issues around DTCA.

Wikipedia cites a study that reported expenditures in the U.S. grew from $1.1 billion in 1997 to $4.2 billion in 2005.  In the last ten years, four major pharmaceutical companies have reached settlements of greater than $1 billion with the U.S. Food and Drug Administration (FDA) over allegations of illegal marketing.  Psychiatric medications were among the drugs involved in all of these settlements.  Prescription drug ads do not need to be pre-screened by the FDA before they can be printed or broadcast, so even if an ad is later found to be in violation of the laws, it will have already been seen by large numbers of consumers.

In Canada there’s a loophole of sorts that allows marketing of drugs as long as there’s no mention of what medical condition the drug is used for.  In 2006 the independent Health Council of Canada published a report looking at at the public health implications associated with direct to consumer advertising of prescription drugs.  They recommended closing this loophole and prohibiting all DTCA of prescription drugs.

What are the potential benefits?

Clearly the winner here is the drug companies themselves.  But what are the supposed benefits to consumers from this kind of advertising?  According to the Health Council of Canada report, some of the benefits that are claimed are consumer education, increased autonomy in health care decision making, earlier diagnosis of illnesses, and increased medication compliance.

Public service announcements may be educational, but commercial advertisements are not.  Whether its drugs or laundry detergent, the purpose is to sell a product.  Any information that is gained through commercial advertising is only to support the primary sales purpose and will likely heavily biased.

In terms of autonomy, I’m not sure that going to the doctor and requesting drug X truly represents autonomous decision making.  In fact, if patients are forming spurious judgments about the state of their health and the treatment they need, they lose the true autonomy that comes from getting a well-reason diagnosis and being presented with appropriate treatment options in a way that allows them to make informed decisions.

As for earlier diagnosis, this brings to mind issues with misleading Paxil advertising that essentially claimed that everyone (and probably their dog too) had social anxiety disorder and needed to be medicated.  Social anxiety is a very real and potentially debilitating condition, but the makers of Paxil were casting a much wider net than that.  People who are unwell will make their own decisions about whether or not to seek medical help, but there’s no need for the masses to go rushing to their doctor asking for drugs because pharmaceutical marketing campaigns told them they were most likely sick.

I fail to see how compliance could be improved, unless the line of thinking goes that if a patient asks their doctor for drug X (whether they need it or not), they’re more likely to take drug X?  Or does seeing a Pristiq ad on tv remind someone that they forgot to take their medication that morning?  It all seems like a rather flimsy argument.

What are the potential harms?

According to studies cited in the Health Council of Canada report, direct-to-consumer advertising influences both patient demand and physician prescribing.  A study of general practitioners in New Zealand found that almost 70% felt pressured by their patients to prescribe medications.  A study conducted in the U.S. and Canada found that when patients went into an appointment requesting a drug, they were 17 times more likely to be prescribed a drug by the end of that appointment.

Pharmaceutical ads that claim Drug X is wonderful for condition Y are targeting consumers who likely don’t have the medical knowledge base to determine whether Drug X is in any way appropriate for them, and may have no idea if they actually have condition Y or not.  If they go to their doctor requesting Drug X, a prescriber may order Drug X rather than the more appropriate Drug Z in order to appease the patient, or they may try to appease the patient by giving them Drug X even though they don’t actually meet the full diagnostic criteria for condition Y.  While this may seem like poor practice on the part of physicians, it’s certainly not unheard of.  As an example, overprescribing of antibiotics is driven in part by patients who are going in to see their doctor and demanding antibiotics even though they most likely have a viral illness that antibiotics will do nothing for.  Doctors are busy enough without having to spend time trying to re-educate patients who have been misinformed by drug company ads.

 

Decisions about an individual’s medication treatment should be made by that person and their healthcare providers based on their specific health concerns.  Pharmaceutical companies should not have the opportunity to interfere in that process.  The whole reason drugs are prescription only is that medical professionals need to determine whether or not they are appropriate for a given patient.  If patients are going into their medical appointments having actually researched treatment options, that’s great, but watching a pharmaceutical ad is not research.  It’s a sales pitch.

A 2013 opinion piece in the New York Times says that “biased pill-pushing messages are a public health menace.”  I agree, and it would be nice to see regulators in the U.S. and New Zealand stand up to the powerful pharmaceutical lobby and put an end to direct to consumer advertising.  Sales tactics have no place in mental health care.

 

What are your thoughts?

 

Sample ads posted on Youtube:

 

psych meds made simple

 

My first book, Psych Meds Made Simple: How & Why They Do What They Do, is now available on Amazon as an ebook or paperback.  It’s everything you didn’t realize you wanted to know about medications!

Adventures in stigma in the ER

I mentioned in yesterday’s post that a few days ago my family doctor had sent me into hospital because of worsening shortness of breath.  It seemed like the ER doc took one look at my list of psych meds and decided to write me off as a psych patient.  He barely listened to anything I said, and kept asking what the point was of my GP sending me in.  All he wanted to do was repeat the tests my GP had already done and refer me to an outpatient clinic.  I was upset with being dismissed like that, and there was no need for me to be in ER to do what my doctor had already done, so I left.

Then yesterday comes along.  From the time I woke up, I was extremely dizzy, to the point where even walking around my apartment was difficult.  I checked my blood pressure a few times, and it was very high.  My heart rate was also high.  On one recheck of my blood pressure it was 170/118, which is extremely high.  I still didn’t really want to go back to ER after the experience I had a couple days before, but I called the provincial Healthlink phone line and talked to a nurse, who thought I should definitely go in to ER.

I was too busy to make it to my building’s front entrance to catch a taxi, so I called an ambulance.  The paramedics showed up a short time later.  When they loaded me in the ambulance, they rechecked my blood pressure.  It was still high, but not dangerously so.  At that point I was freaking out, thinking that ER was going to brush me off as a psych patient and not take the physical stuff seriously.  I was upset and started crying, and told the paramedics there was no point in me going to ER.  They assured me that my physical issues were concerning and they would advocate for those to be taken seriously.  After several minutes of cry-fest, I decided to go ahead and go to ER, mostly because I didn’t think I could walk back to my apartment from the ambulance.

After waiting for a while in the waiting room with paramedics, a triage nurse directed me to a chair in the triage area to wait in.  I had no further contact with ER staff until 3 hours later when the psychiatric triage nurse came to talk to me.  The initial triage nurse had entered into their system that my presenting complaint was depression.

I was so upset with this, and I wish I hadn’t had such a strong emotional reaction because it made me less able to stand up for myself.  I asked to talk to the nurse who had triaged me, and she was defending her decision, saying I was in ER for a mix of things and she had to pick one so she had picked depression.  She showed me the triage form she had completed for me based on what ambulance had said, and based on that my presenting concerns were shortness of breath, dizziness, and hypertension, and depression was part of my history.  Yet when entering me into the hospital system, it was depression.  I told her that had nothing to do with why I was there, but she kept insisting that yes, it was.  She minimized all of my physical concerns, to the point of being really offensive.  She told me that my vital signs were stable, even though it had been three hours since my vital signs were last checked.  One of the things she brought up was that I didn’t make eye contact during the two seconds that she directed me to a chair, as if that right there decided things.  I told her that this was typical of the stigma around mental illness, and she said she didn’t have stigma, and she has friends with mental illness.

I asked to speak to a manager, but with it being a weekend there wasn’t a manager on duty, so she brought in the ER charge nurse.  Of course the charge nurse backed the triage nurse, minimized my physical concerns, and was disgustingly patronizing.  Any time I swore she shushed me and told me not to swear because there were senior citizens around.

At that point I was just done, so I left.  No marching confidently out; I was still extremely dizzy, so my walking was slow, tentative, and wobbly.  But who gives a crap about that, right?  I’m JUST a psych patient.

This hospital is part of Vancouver Coastal Health, an organization that has traumatized me before, both when I have been a patient and when I was an employee (I’m a nurse) being bullied.  While they proudly claim to have processes in place for dealing with complains, I know from experience that what they actually do is brush things under the rug rather than acknowledging and dealing with them.  They steadfastly refused to admit that the workplace bullying I experienced actually happened.  Their modus operandi seems to be making the whole ordeal as stressful as possible for the person making the complaint.  So I emailed their Patient Care Quality Office to express my concerns, but I asked them not to contact me to follow up, and instead pass on to the ER manager that some anti-stigma training is called for.  I also sent in a complaint about the paramedics who transported me to hospital for telling me one thing and telling the triage nurse something entirely different.  I’m also going to call out Vancouver Coastal Health on Twitter.

Unsurprisingly, this has set me back in terms of my depression.  I’m prone to developing psychomotor retardation (a depressive symptoms involving slowing of movement and thoughts) in response to overwhelming stressors.  Combine that with ongoing dizziness and moving around is quite the challenge.

This kind of thing is not okay.  There is more than enough stigma to go around without health care providers hopping on board.  Just because someone has a mental illness does not mean that it’s always to primary issue or that their physical concerns are trivial.

Weekend wrap-up

wrapping paper, ribbon, and twine

Rawpixel on Pixabay

Here’s what happened in my life over the past week:

  • The difficulty breathing that started last week has just gotten worse. Since further testing wasn’t going to be available any time soon in the community, my doctor decided to send me in to emergency. The waiting room was horrible – way over-stimulating.  Unfortunately, it only got worse from there.  The ER doc had clearly decided by the time he met with me that he wasn’t going to take me seriously.  He barely listened to a word I said.  He kept asking what the point was of my doctor sending me in.  He thought I had asthma, which is total BS.  I ended up walking out in tears after meeting with him.  It was only afterwards that it clicked that he had asked if I was taking all my medications regularly (I’d told the triage nurse about all the psych meds I take).  Suddenly it made sense.  He had seen my long list of psych meds and made his decision based on that.  He was probably a jackass in general, but anti-mental illness stigma kicked up the jackass factor a few notches.
  • This week has been a bit of a write-off since I haven’t been feeling well.  I’ve spend an inordinate amount of time aimlessly clicking back and forth among the various tabs and windows I have open on my computer, which would be fine except it’s not the least bit relaxing.
  • I has a post I’d previously published on my blog about the difference between trauma and PTSD accepted by The Mighty.  It was almost 2 months ago that I had submitted it and I had pretty much given up hope.
  • I found some very good cookies and hot chocolate mix at a grocery store I don’t usually shop at, so  that’s been my indulgence for the week.

How has your week been?

Dead if you do, dead if you don’t? Weighing the risks & benefits of medications

I recently watched the documentary Letters From Generation Rx on Amazon Prime, which looked at instances of people experiencing significant side effects while on psychiatric medication, including people who took the lives of either themselves or others while on psychiatric meds.

One man featured in the film was a Canadian Member of Parliament whose teenage daughter had died while taking medication.  He expressed his belief that Big Pharma has made its way into “every institution in our society we rely of for critical thought”, echoing the sentiments of another interviewee who believed that coroners investigating drug-related deaths were  “the first line of defense for the industry.”

One statistic mentioned by the Member of Parliament was that adverse reactions to pharmaceuticals are the fourth leading cause of death.  I was skeptical of that, and turns out this was for good reason.  The paper where that statistic originated did some fishy extrapolation to arrive at those numbers; additionally, it looked solely at people who died while in hospital and did not consider deaths occurring in the community.

Two men were interviewed who had killed their children while taking SSRIs.  One of them had found out afterwards that because of a genetical polymorphism his body was unable to properly metabolize the Paxil that he had been taking.  He was found not criminally responsible for the deaths because of his mental state at the time (this is the Canadian equivalent of the insanity defense).  Both of the men interviewed, as well as their families, attributed the violent behaviour to the medication.  The film also suggested that mass shootings are often related to psychiatric medication.

A mother and father spoke about their teenager son coming home with a sample pack of the antidepressant Cipralex after going to see his doctor because of a cold.  Within a relatively short period of time, he ended up leaving the house while extremely restless, went to buy a rope, and then hanged himself.  While of course this is deeply tragic, something is clearly missing here; even the most incompetent physician is not going to give someone an antidepressant to treat a runny nose.

Two parents talked about their daughter, who had been diagnosed with Tourette’s, being given the antipsychotic Haldol (haloperidol), and for them that just crossed the line.  They expressed their vehement belief that no 9-year-old should ever be given Haldol.  I think it’s problematic to let statements like this slide into a documentary when these parents are entirely unqualified to be making that broad judgment, regardless of whatever side effects their daughter may have had.  Haldol is in fact approved for pediatric use for Tourette’s, and while regulators may have their shortcomings they are still in a better position to make these judgments than people with no medical training whatsoever.

Fear-mongering messages like those in this documentary may seem to be helpful in raising awareness about serious side effects, but my sense is they cause more problems than they solve.  There is tremendous stigma around psychiatric medications, which makes it more challenging for people struggling with mental illness to make decisions around treatment.  It’s more useful to present the risks in a broader context to empower people to make the best decisions for them.

With any sort of treatment, medication or otherwise, there should always be an individual weighing of risks vs benefits. What’s important to consider, especially for psychiatric conditions, is that the risk associated with not getting treatment can be very high, and suicide can become a very real possibility.

All medications carry some level of risk, and the level of risk that’s considered medically acceptable depends on the nature of the illness. With potentially deadly illnesses, the tolerable potential risk is going to be far higher than what would be considered acceptable for a minor ailment.  With higher risk medications it is incumbent upon prescribers to make sure they are properly monitoring their patients, and for patients to be proactive in reaching out to the prescriber if things are going wrong.

In 2004, the U.S. Food and Drug Administration (FDA) required a “black box” label on all SSRIs warning that they could increase the risk of suicidal thoughts and behaviour in children and adolescents.  This has not been demonstrated in studies of adults using SSRIs.  It’s also important not to confuse this with the spike in suicide risk that occurs when someone has started to respond to treatment but their mood hasn’t caught up yet, which means they may have the energy to act on suicidal thoughts that were already present.  Again, knowledge is key, and everyone involved needs to understand what to watch out for.

It’s also important to address the cozy relationship between national regulators and Big Pharma, which is described in Letters From Generation Rx.  If regulators and Pharma are engaging in any sort of coverup around the frequency of side effects, that means that inaccurate information is getting to prescribers, which impacts that ability to accurately weigh risks and benefits with their patients.

What we need most is not fear.  We need factual, unbiased information so that we can make the right decisions for ourselves, and the more openly we can all talk about it, the better.  Personally, the risks associated with taking my medications for depression are far outweighed by the very really risk of suicide if I don’t take them.  We’re all different, but that’s me.

 

psych meds made simple

 

My first book, Psych Meds Made Simple: How & Why They Do What They Do, will be available Feb 4/19 on Amazon as an ebook or paperback.  It’s everything you didn’t realize you wanted to know about medications!  Find out more on my Psych Meds Made Simple book page.

#BellLetsTalk – What if the elephant in the room could speak?

Today is Bell Let’s Talk Day, an anti-stigma mental health awareness campaign sponsored by the Canadian telecom company Bell.  Similar to the UK organization Time to Change’s Time To Talk Day coming up on February 7, the goal is to get people talking about mental health and mental illness.

A couple of weeks ago I wrote about the book The Stigma Effect and what it had to say about the types of anti-stigma effects that are effective as well as those that are ineffective.  It’s main point was that actual contact with people who have mental illness is by far the most effective strategy, and education/awareness campaigns don’t accomplish a lot, and in some cases they may even be counterproductive.

There are a lot of great organizations out there that are committed to fighting stigma: Time To Change, Sick Not Weak, Stigma Fighters, and the list goes on and on.  These organizations certainly accomplish a lot within the mental health community by getting dialogue going and giving people opportunities to share their stories with others.  I wonder, though, if they are mostly preaching to the choir, or if the message truly getting out.  It probably doesn’t help that pretty much any health condition has a day, a week, or a month, making it hard to stand out in the field.

Even when people do choose to engage in one-off awareness days, how much of an impact is it actually having?  Sure, people can feel good about tweeting something in support, but does that necessarily correspond to changes in attitudes or behaviours?  It’s easy for someone to tweet that people should talk about mental illness, but unless that changes how they respond a friend disclosing their illness, it hasn’t done a whole lot of good.  The Stigma Effect referred to this phenomenon as slacktivism – token support that’s not associated with any real behavioural change.

Far too often, mental illness is the elephant in the room; even when it’s clearly there, people are reluctant to acknowledge its existence, much less talk about it.  Still, talking about mental illness in the abstract on an awareness day is not necessarily going to do anything about said elephant.

Stigma isn’t necessarily due to a lack of awareness or knowledge, in which case awareness-focused campaigns aren’t hitting the target.  I work in mental health, and that did nothing to stop the stigma I experienced from the managers who thought I was unpredictable and potentially dangerous.  They knew quite a bit about mental illness, and they were used to seeing it – except among patients, not staff.  For me as a nurse to have a mental illness, and heaven forbid to speak up about it, went entirely against expected norms.

It would be easy to use that to say people should keep quiet in the workplace about mental illness.  Yet stigma is fuelled by silence.  It exists when there is a line drawn between “us” and “them”, when the “other” is minimized and dehumanized.  To counter those kinds of attitudes, we need to be loud rather than quiet, and show that there really is no “them” because mental illness truly can happen to any of us.

Research shows that the best way to combat stigma is for people to actually have contact with individuals living with mental illness.  There’s no shortage of us out there with mental illness, but people within our community need to feel empowered to speak up and disclose their illnesses.  Of course, fear of stigma can make that very difficult.

And maybe that’s  where the anti-stigma campaigns come in.  Maybe it’s less important the effect they have on society on a broader scale, and more important that they give us the confidence to identify ourselves as people with mental illness and tell our stories.  If someone shares a story on the Time To Change website, perhaps most of the people reading that story will also have a mental illness.  Yet if that person then finds the courage to talk to their family, friends, and coworkers about their illness, that will bring all of those people a step closer to realizing that there is no “us” and “them” when it comes to mental illness.  That counts for a whole lot more than a token supportive tweet on Time to Talk day.

So, if the elephant in the room could speak, it would be a chorus of all of us with mental illness raising our voices and saying we are here, we live with mental illness, and we’re not going anywhere.  Stigma thrives in silence, so we need to roar, and that’s why I speak up on this Bell Let’s Talk Day.

Book review: Depression the Comedy

book cover: Depression the comedy by Jessica Holmes

Canadian comedian Jessica Holmes shares her experiences with depression in Depression the Comedy: A Tale of Perseverance.

I think Holmes is an excellent comedian, and I love the idea of bringing a comedic approach to a book about depression, but some of the comedy aspect was a bit lost on me.  However, I don’t know that I was in the best place to judge, as I was in a pretty dark headspace while I was reading it.  Still, I think that there’s great value in a comedian writing about depression, as it helps to promote the idea that depression truly can happen to anyone.

Holmes uses a self-deprecating style throughout the book, taking ownership of words often used to stigmatize, like “loopy” or “nut”.  She uses some interesting analogies, like describing depression as “the cold sore of the mind.”  Advice from others was likened to adding “pressure to our hamster wheel of discouragement”.

Depression made her become firmly rooted to her sofa, in what she described as her “sofa-tastic lifestyle”.  She describes other symptoms that will sound all too familiar to those of us with mental illness.  She avoided her kids’ schoolyard because there were too many people, and also avoided her friends because she felt like a fraud around them.  When asked by a produce to emcee a talk given by Oprah, her response was a half-hearted “neat”.  Even though Oprah was on her vision board, there was not a “single trace of epic” and she decided to ignore the news and didn’t even think to tell her agent.

As a result of depression the author got into an anger-guilt-repeat cycle in her relationship, with a “nut/enabler dynamic”.  For a period of time she was blaming all the problems on her husband, and while she thought she was being stealthy, her kids still picked up on it.  She talks openly about how her sex life with her husband became non-existent, and how it felt too vulnerable to be intimate.  She also freely admits that depression kept her from connecting to her kids.  This made her feel guilty, and she “tried to make up for it by making every day like a trip to Disneyland”.

The book has some important messages for people who may not be familiar with depression.  Holmes points out that “watching for signs of depression is a lifelong commitment”.  She also writes that we need to persist in telling our stories until there is no more stigma around mental illness.  I really appreciated her openness, and I’m glad that she’s using her public platform to educate people and challenge stigma.

 

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Applying spoon theory to mental illness

spoon theory infographic

image from Pinterest

Over the last year of blogging I have learned many things.  One of those things is spoon theory.  Spoon theory was first described in a 2003 essay by Christine Miserandino, who had used the metaphor to describe to a friend what it felt like to have an invisible illness (in her case, lupus).  She and her friend were in a restaurant at the time, and a spoon was easily available to use as a metaphor.  Spoon theory has since become quite popular and is used to describe many forms of energy-limiting chronic illnesses, including mental illness, and the term “spoonie” is sometimes used to describe people living with chronic illness.

The graphic above shows how some activities may  just take one spoon, while others will take more.  How many spoons each activity will take will vary depending on the individual and where they’re at with their illness at that point in time.  The metaphor is something that those without chronic illness are likely to be able to understand.

One of the things I really like about this metaphor is that it’s very self-forgiving.  It’s not a question of whether you tried hard enough to do something; rather, it’s a matter of scarcity of resources.  It also calls for a very realistic assessment of what you’ve got available, and what the true cost is associated with each type of activity.  It recognizes the cumulative effect of multiple draining tasks occurring within a short time frame.

I think it’s essential that we don’t judge our functioning when our illness is bad based on our daily spoon allotment and spoon requirement per task that we have access to when things are going pretty well.  In the graphic above, getting out of bed just requires one spoon.  When depression is really bad, that number might be more like 10, and it may move back and forth in between those numbers over the course of the illness.

Sometimes a task will taking more spoons for different reasons.  Taking a shower might take a lot of spoons for energy reasons, or it might take more spoons due to limited motivation.  The number of spoons required to be around people will vary depending on a number of factors.  Sometimes it’s a matter of being overstimulated.  Sometimes it’s more to do with cognitive slowing, because I’m slow to come up with responses.  Context matters.  Group social situations always require a lot of spoons because I’m such an introvert.  In my work as a nurse, dealing with patients always requires fewer spoons than dealing with colleagues.

I like how individualized spoon theory is.  There’s no standard that applies to everyone, and it’s just as easily applied to physical and mental illnesses, or a combination of both.  What I think is most important is that we be realistic in evaluating both our daily spoon allotment and the spoon requirements of different tasks.  We need to challenge the “shoulds” that hold us to unreasonable standards, whether those standards involve comparisons to others or comparisons to ourselves when we are feeling well.

Is the spoon theory something that resonates with you?  How do you apply it to your life/illness?

Out of Mind, Out of Sight

Out of Mind, Out of Sight film

I first heard of this documentary when I saw it recommended on the Bipolar, Uninvited blog.  It sounded interesting, so I wanted to check it out.

It’s shot at an inpatient unit in a forensic psychiatry facility in Brockville, Canada.  All of the patients had committed a criminal offense but the courts found them not criminally responsible on account of mental disorder (NCRMD), the Canadian term for not guilty by reason of insanity.  To be found NCRMD, essentially the court must be convinced that at the time of the offense the person was affected by their illness to the point that they were unable to distinguish right from wrong.  There’s more info on NCRMD on the Mental Health Commission of Canada‘s website.

One of the patients who spoke extensively with the filmmakers was a young man who had killed his mother while extremely psychotic.  At the time of filming, his schizophrenia was reasonably well controlled with clozapine, and he was very well spoken.  He was able to demonstrate insight into his illness, although he’s never really been able to come to grips with what he did.  At the beginning of the film he was reluctant about being released, and he was quite fearful that people around him would know about what he did.  By the end of the film, though, he’d had a successful transition to the community and outpatient care.

His family was also interviewed.  One of his brothers expressed that there was no need to forgive him because their mother had died because of his disease, not him.  While the family were very supportive, they were also realistic.  His father expressed the belief that he should never be given an absolutely discharge (i.e. a release with no conditions whatsoever) because he can get ill so quickly if he stops his medications.  This wasn’t because he thought his son needed to be punished; rather, he recognized the seriousness of his illness and the absolute necessity of ongoing treatment.

The staff observed that female patients were actually more violent than the males while on the unit.  One of the female patients was quite pleasant while interviewed for the film, but she could become violent quickly and had punched multiple large holes in the walls.  Staff reported that one of the most difficult patients was a female with borderline personality.  She would do very deep cutting, and she had almost managed to kill herself by strangulation while on the unit.  At one point she had set a fire because she was angry with staff.

The staff seemed kind and caring.  They were shown intervening in various situations, including conflicts between patients and a patient who was highly distressed because of her auditory hallucinations.  They appeared to view the patients as people rather than criminals, and treated them with respect while maintaining firm limits.

I thought the film did a lot to humanize people who have committed violent acts while psychotic.  They explain how rare it is for psychotic people to become violent, and also state that it’s often family members who become the targets rather than random strangers.  Simple things, like showing the romantic relationship between two of the patients, helped to show that these are just regular people who happen to have serious illnesses.  Nothing was presented in a sensationalized manner.

The film ended on a hopeful tone, which is not who you’d likely expect to see from a film about people who had committed violent offenses.  It didn’t play into stereotypes or makes generalizations.  It’s a film that’s likely to decrease stigma rather than promote it, and for that I definitely give the filmmakers props.

 

You can watch Out of Mind Out of Sight here:

https://tvo.org/video/documentaries/out-of-mind-out-of-sight-feature-version

Fluctuating motivation

A few weeks ago (I think – I’m not good at remembering time in a relative sense) I was feeling pretty motivated.  Maybe my concentration wasn’t the best, but I had several things on the go and I was keeping busy shuffling back and forth amongst these various things.  I had to use lists to keep track because I have a hard time judging multiple things in my head at the same time.

This week isn’t like that.  I feel aimless.  I have some books downloaded that I want to read,  but haven’t gotten started on yet.  There are some drafts I’ve started for blog posts, but I don’t really care enough to finish them right now.  There are also some other writing projects I’ve started but don’t have the drive to work on.

I recently had a couple pieces that I’d submitted to publications that weren’t accepted, plus some that it’s been long enough since I submitted that I’m unlikely to hear back from them.  I know that it’s totally par for the course and I don’t take it as a rejection of me in general, but I do find it drains my energy.  Given that I don’t have a lot of that to begin with, I think it’s probably good to take a bit of a step back from trying to write for platforms that are more competitive (in the sense that there’s a reasonably good chance of rejection).  I have no intention of trying to make a living as a writer, so I think I’m better off trying to focus my limited energy, attention, and motivation on things that will give the most mental bang for my buck, so to speak.

I think another reason for my decreased motivation is being distracted by concerns about my physical health.  That feels very heavy right now, and it’s hard to be motivated when I’m carrying around a rhino on my back (I was trying to think of an animal and there’s a photo of a rhino on my wall, so rhino it is).  It feels like uncertainty has stalled me in a sort of mental no-man’s-land.

But I guess the natural state of things is that motivation will ebb and flow like the tide.  Motivation is low now, but it will come back in its own time.

How do you manage dips in motivation?

Is there something wrong with “behavioral health”?

In my local health care system in Canada, the term behavioral health isn’t used, but I’ve seen it used a fair bit in the context of other mental health systems.  As far as I can tell it’s mostly an American term.  Since it’s relatively new to me, I tend to consider it from a more literal perspective rather than accepting it out of familiarity, and it actually strikes me as rather offensive.

According to the United States governmental agency the Substance Abuse and Mental Health Services Administration (SAMHSA), behavioral health is:

“a state of mental/emotional being and/or choices and actions that affect wellness.  Substance abuse and misuse are one set of behavioral health problems. Others include (but are not limited to) serious psychological distress, suicide, and mental illness.”

Behavioral health care includes health promotion, prevention, treatment, and maintenance strategies across a continuum of care.  SAMHSA even has a fancy little diagram to depict this.  The whole thing seems a bit absurd, though, given the lack of health care coverage in the U.S., but perhaps that’s the Canadian in me talking.

 

It sounds like behavioral health is a whitewashed, euphemistic term for mental illness and addictions. The American Hospital Association puts it pretty clearly: “Behavioral health is used to include both psychiatric and substance use disorders”.  So it is simply a matter of brevity (finding a term that uses fewer words to save printer ink?), or does it reflect fundamental attitudes towards this group of disorders?

I take issue with the term behavioral health because behavior is something that’s directed outward and the implication is that it’s under voluntary control.  SAMHSA’s definition refers to “choices and actions”.  To me it seems that the use of behavioral health implies that the health care system is passing judgment on our externally observed behavior, as though they’re deciding what actions are “healthy” and acceptable by social standards.  Except what is directed outward is often a small part of what’s happening in mental illness.  The main problem is what’s going on internally.  It’s not about whether we “look crazy” or “act crazy”; or is it?

So why behavioral health in the first place?  I suspect it’s to do with people making decisions from on high about what terminology is considered appropriate and socially acceptable.  Addiction has fallen out of favor with many organizations, and substance use disorder has taken its place.  This is consistent with the DSM-5 terminology of opioid use disorder, for example, which changed from the DSM-IV diagnoses of opioid abuse and opioid dependence.  Then again, the DSM categorizes substances use disorders as mental disorders right along with all the other mental illness diagnoses.

Behavioral health, though, neatly shuffles mental illness and substance use disorders into a tidy little box with a neat little label slapped on.  Any time people start looking for tidy bland little labels, it highlights underlying stigma.  If mental health disorders, including addiction, were socially understood and accepted, would there be any reason to cook up terms like behavioral health?  Or does that term exist as a sort of protective barrier to keep thoughts of crazy people from intruding into the collective consciousness?

If government agencies and organizations that provide health care can’t bring themselves to acknowledge mental illness and addictions as brain-based diseases, how can we expect Jane Doofus to accept that these conditions are legitimate health conditions?  If I was Jane Doofus, behavioral health would suggest to me that people need to just get over it and behave properly.  So, there’s a mass shooting on the news?  Sounds pretty behavioural and unhealthy to me as Jane Doofus, so mental illness must be dangerous, right?!?

Mental illnesses are disorders of what is happening in our minds/brains.  Taking the “mental” out of mental health is not helpful for those of us living with those disorders.  SAMHSA can think whatever they want about my behavior; it’s really none of their business, and it’s not what my illness is about.