Tag: stigma

How picky should we be about suicide-related language?

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dictionary excerpt

Language matters when it comes to talking about suicide, particularly when in it’s mentioned in the media.  Sometimes, though, I wonder if getting too nitpicky about language is counterproductive.  After all, as stigma researcher Patrick Corrigan says, stigma gets attached to labels but is not a product of those labels.

On Twitter I recently came across a link to a post on the Speaking of Suicide site that talked about language around suicide, including the phrases committed suicide, completed suicide, and died by suicide.  The author argued that the phrase “completed suicide” should not be used, and part of her justification was that completing something has positive connotations linked to accomplishment while incomplete has negative connotations.

The author links to the Maine Suicide Prevention Program site, which states that the phrase completed suicide perpetuates stigma and implies that the person has made a previous attempt whether or not they actually have.

I understand why a term like “commit suicide” is objectionable.  Personally it doesn’t bother me all that much despite its problematic origins.  I guess I think of it as kind of like the term “bandaid”.  It’s used so widely that the original nature of the term fades into the background, and the meaning moves beyond the literal meaning of the words involved.  I don’t imagine many people these days are making the link between committing suicide and committing a crime, aside from those countries where, sadly, it does continue to be a crime.  Like I said, though, I can understand why for many that wording is considered unacceptable, so it’s not a phrase I use myself.

The Speaking of Suicide article caught my attention in large part because I do use the term “completed suicide”.  If the word completed has positive connotations in the author’s mind, it seems to me like that’s her concern, not mine.  According to the Merriam-Webster dictionary, synonyms of completed include: concluded, done, ended, finished, over, and terminated.  Sounds about right to me.  As for the Maine Suicide Prevention Program’s argument that it implies a previous attempt, that seems like a fairly large leap to make.  And how does it perpetuate stigma?  I’m honestly not seeing the connection there.

We’re all going to have our own personal language preferences, and it seems unlikely that everyone will come to an agreement on what words to use when i comes to suicide.  That’s okay, though.  We don’t all have to talk about it the same way.  What matters is that we speak up.

Whether we talk about someone completing suicide, dying by suicide, or whatever you want to call it, the stigma is still there.  To actually chip away at the stigma we need to get busy talking openly about suicide.  Nitpicking over language just turns into a distraction from the real problem; it doesn’t change the fact that people are going into emergency rooms feeling suicidal and getting turned away because sorry, they’re just not suicidal enough.  So let’s focus our attention where it belongs and ease up a little on the language police.

 

Have you checked out my book Psych Meds Made Simple?  It’s available on Amazon as an ebook or paperback.

 

Alienation and brutality

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Alien Boy documentary

Alien Boy: The Life and Death of James Chasse is a documentary, available on Amazon Prime, about a man with schizophrenia who was killed by police in Portland, Oregon.  This film was funded by The Mental Health Association of Portland and over 1500 individual supporters, which I thought was pretty impressive.  It’s an extremely disturbing example of policy brutality against a man who had done nothing wrong except be mentally ill.  This wasn’t just an isolated incidence of brutality by two officers who had previously been named in police brutality lawsuits, but rather an indication of much broader problems with use of force and police attitudes in general when it comes to people with mental illness.

James, or Jim Jim as he was known by family and close friends, began having psychotic symptoms in his mid to late teens.  He lived in a series of group homes in her early adulthood, but got stabilized on medications and was able to live independently.  He was a regular at the public library, and he enjoyed drawing comic books.

In the couple of months leading up to his death, he had stopped taking his medications.  His mental state deteriorated, and his hygiene and self-care were very poor.  He had lost a significant amount of weight.

On the day of his death, police approached James in a public area.  They noticed that he was stiff legged and rocking side to side.  One of the officers later said that he was “hunched over, and his hands are towards his waistband like somebody either urinating or just starting to finish and do the shake”.  When addressed he looked at the police with “sheer terror” in his eyes and the cops  suspected he was going to run.  James had good reason to want to run; he had been beaten up by police in the past.

He did run, and police gave chase, with one of the officers tackling him.  The officer (250ish pounds) later said in an inquiry that he pushed James down but denied that he landed on top of him.  Witnesses commented that “it literally looked like 2 people shaking out a rug”, with knees to  his chest, punched in the face, and kicked.  He was then tasered and he passed out, lying in a pool of his own blood,

Photos taken by witnesses show James on the ground, handcuffed and with leg restraints.  Fire and ambulance personnel were standing around with police, two of whom were holding cups of coffee.  Meanwhile the police were heard by witnesses making false statements about James having drugs.  Paramedics were not informed of the force used or the tasering.  They found his vital signs were normal, and left it up to police to decide if he should be transported to hospital or taken to jail.  They chose to take him to jail.  As the paramedics were packing up to go, James cried “don’t leave me, don’t leave me” according to witnesses, although the police denied this in the inquiry.

Video from the jail shows the cops carrying him in, arms and legs restrained, like you might carry a duffel bag, with a spit hood over his head.  Once they had him in a cell he started breathing and started seizing.  They called the jail nurse, but didn’t take the spit hood off.  When she showed up, she decided that she couldn’t take responsibility for him, so the cops decided to drive him to the hospital, which was 15-20 minutes away, still restrained and with the spit hood on.  They stopped to talk to a sergeant on the way out, and did not have lights and sirens on for the drive to the hospital.  Along the way, James died.

The state medical examiner found that the cause of death was blunt force chest trauma.  He had 26 breaks to 16 ribs, including in areas that aren’t necessarily that easy to get at.  She suspected he likely would have survived had paramedics transported him to hospital rather than police taking him to jail.  The toxicology report showed no drugs of any kind, including medications.

A grand jury review of the in custody death resulted in no criminal charges.  After an internal review by the police bureau, the city requested a Department of Justice investigation into bias in how the local police dealt with mental illness.  That investigation concluded that the Portland police did use force excessively, including tasers, and this force was often used in dealing with minor offenses committed by people with mental illness.

Oh, and the officer who tackled James?  He later ran for county sheriff and was elected.

Police have a hard job to do.  But this kind of thing should never happen.  I can understand that on the rare occasion someone who’s highly psychotic and brandishing a weapon may not be able to be safely contained without legal force.  I can accept that.  But James Chasse?  He did absolutely nothing except be mentally ill.  I suspect that an animal would have gotten better treatment than did Mr. Chasse, a man who was ill and needed to go to hospital.

I think prosecutors and governments need to really reflect on how they make decisions about pursuing prosecution when it comes to in custody deaths, particularly when it comes to marginalized communities, like people with mental illness, like racial minorities.  The police should be there to protect the most vulnerable, not to take their lives.  Change can’t happen soon enough.

 

Have you checked out my book Psych Meds Made Simple?  It’s available on Amazon as an ebook or paperback.

So you know… (S.Y.K.)

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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)

Adventures in stigma in the ER

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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

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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?

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

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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.

Is there something wrong with “behavioral health”?

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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.

Why do people think vitamins can cure mental illness?

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This is a follow-up to an earlier post I wrote on whether “natural” is better.  I also recently saw the documentary Letters From Generation Rx on Amazon Prime, and it got me thinking about the notion that vitamins can cure mental illness.  I suppose in some ways it’s a natural reaction to the imperfect nature of currently available treatment options.  Medications don’t work for everybody, and it can sometimes take a lot of trial and error to find something that does work.  There are potential side effects, sometimes very serious ones.  That does not mean, though, that we should be grasping at straws and using unproven methods.

One of the parents featured in Letters From Generation Rx was the founder of TrueHope, a Canadian company that markets micronutrient formulas as a treatment for bipolar disorder and several other conditions.  This man’s wife had suffered from bipolar and taken her own life.  His daughter and son both had bipolar disorder and had not responded well to medication.  He decided to start them on micronutrients, including forcefully sedating his daughter and making her take the pills.  Both the son’s and daughter’s illnesses eventually went into remission, and the family attributes this to the micronutrients.

It was after his children’s recovery that the father started the TrueHope company, which has faced various regulatory issues and court challenges with Health Canada.  The website claims that “Truehope EMPowerplus Advanced is scientifically proven to effectively help with bipolar disorder” and “causes significant reductions in the symptoms of bipolar and other mental disorders”.

I was curious to see how EMPower Plus Advanced would compare to Ultra Preventive X by Douglas Laboratories, a super-powered multi-vitamin/mineral/supplement that I’ve taken before on the recommendation of my naturopath.  The ingredient lists were very similar.  Many of the vitamins and minerals were in approximately the same amounts in both formulas.  Ultra Preventive tended to have higher doses of some of some of the vitamins, while EMPower Plus tended to have higher doses of the minerals.  As for the remainder of the supplements, EMPower only lists the ingredients without amounts, describing it as a proprietary blend.  Ultra Preventive has many of the same supplements, but its label explicitly states the amounts.  Ultra Preventive also has more active ingredients overall, while EMPower claims that it has a special formulation that allows for greater absorption.

I took Ultra Preventive for about 6 months last year because my bloodwork showed elevated levels of an inflammatory marker, and it was one of the recommendations my naturopath made to try to bring down the inflammation.  Did it cure my depression?  Nope.

For years vitamins have been suggested by some as a treatment for schizophrenia. In 1968, molecular biologist Linus Pauling proposed the term orthomolecular psychiatry, and made the argument that mental illness should be treated with vitamins and other substances naturally found in the body in order to bring them back up to their optimal concentration.

WebMD has a list of supplements that are sometimes used for schizophrenia, and gives an effectiveness rating for each.  Most are listed as insufficient evidence, while others are listed as likely ineffective.  A few are listed as possibly effective: ginkgo biloba, glycine, and inositol.

The site schizophrenia.com lists some vitamins and other supplements that “seem to help” people with schizophrenia, including some that have shown promising results in early trials, but it lists EMPower Plus as a “disproven (or unproven) and overmarketed ‘schizophrenia treatment'”.

A study in the journal CNS Drugs found that supplementation with folic acid, vitamin B12, and vitamin D could be helpful for certain individuals with schizophrenia, but they did not recommend it as a primary treatment strategy.  This is the kind of approach I think we need to see more of.  Not fringe groups saying vitamins only, not scientists dismissing vitamins and other nutrients as not worth studying, but a balanced approach that looks at how various nutrients can fit into the overall picture of mental health.

Meanwhile, the TrueHopes of this world are likely to add to the stigma around mental illness, as the vitamin cure perspective feeds into ideas that mental illness isn’t actually real.  That’s really not helpful.  What we need is more evidence-based treatments that will actually help those of with mental illness to live better lives.

 

 

How can we fight stigma most effectively?

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I was inspired to write this post after reading the book The Stigma Effect: Unintended Consequences of Mental Health Campaigns.  It’s written by psychologist Patrick Corrigan, whose research on stigma I first encountered when I was working on my Master’s thesis, and in it he challenges a lot of commonly held ideas about how we should fight stigma.

The stigma effect that the book is based on refers to unintended negative consequences of anti-stigma efforts.  While public campaigns to reduce stigma are well-intentioned, in turns out that in some cases they may actually end up having the opposite effect.  That’s why I think it’s really important that we pay attention to what Corrigan has to say in order to make sure that we’re being as effective as possible in the fight against stigma.

What is stigma?

Corrigan starts the book with a primer on what stigma is.  Stigma is not actually inherent in mental illness itself.  Instead, things like psychiatric symptoms, social skills deficits, poor hygiene, and illness labels act as cues for people to apply stereotyped beliefs and discriminatory behaviours.  Stereotyped beliefs are framed as facts, but in reality are based in inaccurate assumptions.

We’ve all been exposed to the stigmatized belief that people with mental illness are dangerous and unpredictable.  Corrigan explains that in a 2006 study, around 40% of Americans thought people with mental illness were dangerous.  This was about the same as the figure in 1996, and double that from 1956.  Yet it would seem that there is much more education now about the reality of mental illness and public exposure to anti-stigma campaigns, so something isn’t adding up here.

How do we fight it?

The book outlines three broad types of anti-stigma approaches: protest, education, and contact.  These may be informed by different agendas depending on who’s leading the campaign.  Professional groups tend to promote the idea that decreasing stigma will lead to more people accessing mental health services.  Families and other supporters may have a similar agenda, whereas people with mental illness may be more focused on promoting dignity and self-worth.

Slacktivism

Corrigan uses the term “slacktivism” in which people are able to easily endorse or support something, e.g. on social media.  This takes little effort and generally doesn’t translate into any sort of meaningful action.  There are multiple large campaigns that allow for slacktivist engagement, like Time To Change’s Time To Talk Day or Bell Let’s Talk Day.  There is a ton of promotion and these efforts capitalize on the easy buy-ins across a broad swath of the population, but from what Corrigan has to say these may not be very effective.

Language usage

Chances are many of us have seen (or been) people arguing about language change, such as using “completed suicide” rather than “committed suicide”, or “person with schizophrenia” rather than “schizophrenia”.  Except you know what?  It can actually have a negative effect, according to Corrigan.  There are a couple of elements to this.  If you tell someone not to think about a white bear, what are they guaranteed to think about?  A white bear.  Also, we haven’t necessarily come that far from our inner 6-year-old; telling people what not to do naturally triggers psychological resistance resistance to change.  Corrigan also points out that language is the result of stigma, not the cause of it, so targeting language ends up trying to address the issue backwards.

I found it interesting that Corrigan uses the term patient to refer to a role that people play.  I choose the same term in the same context, although I recognize some may see it as archaic.  Apparently surveys of people with lived experience show no particularly label that’s preferred; however, consumer has been found to be the least preferred.  That rather surprised me.  Personally I can’t stand the term consumer, but thought I was somewhat alone in this; apparently not.  The term consumer is fairly popular, though, which makes me wonder if its use is because organizations are trying to be politically correct.

Education as an anti-stigma strategy

When it comes to attempts to educate the public about mental illness, Corrigan doesn’t mince words: “Education, at least for adults, is an overrated, mostly feckless approach to erasing stigma.”  He gives the example of myths versus facts as a common type of educational approach.  This seems rather unfortunate; I certainly love me a good myths vs facts!  The messages are likely to go right over the head of the average person who is already prejudiced; plus, they can trigger a psychological resistance effect that can actually increase stigma.  Corrigan gave the example that something similar been observed with campaigns to educate parents about vaccines, which have actually increased resistance to vaccination.

Another surprise?  Apparently public service messages that mental illness is biologically based are actually unhelpful, because people seeing these messages tend to conclude that recovery is unlikely.  Even cheerful antidepressants about suddenly un-depressed people singing and dancing and enjoying life can also lean people towards conclusions that recovery is unlikely.  One of the messages that I tend to be quite attached to is that mental illness is just like any other else, but guess what?  Such messages can actually increase perceptions of dangerousness and unpredictability.

Contact as an anti-stigma strategy

Ok, so what does work?  For “normal” people to have contact with people living with mental illness.  It’s most effective when the contact is with average people rather than seeing celebrities open up about their experiences with mental illness.  Contact works best with people who are believable as having a mental illness, but don’t conform closely with stereotypes.  Contact with someone who is acutely unwell and acting like a “crazy person” is more likely to reinforce stereotypes.  Contact also works better when it’s with people from similar sociocultural groups.

Corrigan explains that contact is effective because not only does it decrease negative beliefs, it helps to replace them with positive ones.  It’s 2-3x more effective than education at changing stigmatized attitudes.

What advice does he have for us to share our stories effectively?  We should share stories of our illness experiences, but also about our recovery journeys.  We should talk about how we have been affected by stigma in spite of what we’ve managed to overcome, and conclude with a call to action to address this injustice.

The thing with contact, though, is that it requires us within the mental illness community to speak up.  To have the greatest effect, we need to not openly speak up anonymously online, but also “come out” as mentally ill in our regular environments.  We need to make it personal.  We need to demonstrate that there are many faces of mental illness, not just the stereotyped homeless person on the street.  That’s not to say that coming out is easy, but to really make a dent in stigma a critical mass of us needs to do so. We truly can be the change we wish to see in the world.

Were you surprised by anything this book had to say about what does and doesn’t work? Do you have any ideas about the best way for us to tackle stigma?

 

I received a reviewer copy of The Stigma Effect from the publisher via www.netgalley.com.

Book review: My Brother’s Journey

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Book cover: My brother's journey

My Brother’s Journey: From Genius To Simpleton by Marie Abanga is a moving tribute to her younger brother Gabriel, whose life was taken away far too soon by mental illness.  It includes not only Marie’s words, but also the words of others who knew and loved her brother.

In the book she shares what a kind person he was with great personal and academic promise until illness entered his life and irreversibly changed him.  The “simpleton” reference in the title reflects the challenges he had with performing basic tasks towards the end of his life.  The book includes letters he had written, which showed a clear decline given that he had previously done very well in school.

He was diagnosed with epilepsy while he was still in school, and had multiple hospitalizations.  He was later diagnosed with schizoaffective disorder.  He moved to Germany to further his studies, but ended up being deported because his illness was uncontrolled.  Marie shares how difficult it was when he returned home to Cameroon; it was difficult to tell which parts of what he was saying were real and which were not, and she described him as resembling a ghost.

He later was able to get a visa to move to the United States.  At the time, it was thought that it would be the best thing for his health, and perhaps the “black magic” that affected him might not be able to cross the ocean.  However, his health further deteriorated there.    Marie describes the numerous challenges in trying to get adequate care for him, made even more difficult by the fact that his immediate family was back in Cameroon, and Marie was unable to get a visa to go to the U.S.

When the family were informed that Gabriel had died, the cause was unknown.  Marie is openly critical of the health care system that let him down.  In particular she condemns the institution where he was held after an altercation with police.  She shares a letter her mother had written to the institution asking that his medical needs be addressed, but this seems to have fallen on deaf ears.

Marie writes about the stigma around mental illness in Africa, where the subject is considered taboo.  Those who are ill may be shunned by their families and rejected by their communities, and may be talked of as being wicked, bewitched, or possessed.

What really stood out for me was the prevailing attitudes in Cameroon regarding mental illness.  I’ve heard that ideas such as black magic exist, but this book really brought it to life.  It’s also interesting that he seemed to do the best when he was in Cameroon, and worse when he was in countries with supposedly more advanced health care systems.  This is a sad story of a very promising young man who fell through the cracks – the very wide cracks – in the health care system.

 

You can find Marie on Marie Abanga’s Blog.

 

You can find my other book review here.

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

How do you respond to stigmatized language?

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Crazy.  Psycho.  Schizo.  Nutbar.  

Mad.  Retard.  Lunatic.  Loony tunes.  

Insane.  F***ed in the head.  Bonkers.  

Whack job.  Batshit crazy.  Certifiable.

These are just a few examples, but when it comes to derogatory mental-health related terms, there are many of them and we hear them often.  Sometimes we even use them ourselves. A study by Rose and colleagues identified 250 stigmatizing terms used by 14-year-old students in England to describe people with mental illness, including some I’d never heard of before (e.g. “window licker”).  Clearly these terms are quite pervasive if  they’re already well known in 14-year-olds.

So how do we address the use of these words that have become entrenched in common usage?  Is it as simple as advocating for these words to be completed removed from the social lexicon?  Perhaps a good place to start is by asking a few more questions to figure out exactly what we’re talking about.

Does it make a difference when terms are reclaimed by the target group?  

A term like “nigger” is highly racially charged, but the connotations are far more nuanced when it’s used within the black community.  “Dyke” was considered a derogatory term, but has since been reclaimed by people in the lesbian community.  “Queer” is another term reclaimed by the LGBT community.  “Bitch” is sometimes used to describe strong feminist women.  Is this sort of language reclamation happening within the mental illness community?  I sometimes use “crazy” as a humorous way to refer to myself and other members of my in-group (i.e. mentally ill).  Does that  contribute to stigmatization?  Does it make a difference that I’m applying that language to myself as well?

Does it matter how close we are to the person talking?

I think the closeness of one’s acquaintance can affect both the ease and importance of calling out discriminating language, but there are other factors as well.  My 101-year-old Grandma grew up in a time when people with mental illness were locked up in institutions, and there was really no such thing as political correctness.  She’s unable to remember that I have a mental illness, and even when she was aware of it she really had no frame of reference to understand it.  Sometimes stigmatized language will pop out in relation to something we’re talking about, but in that context I don’t see any real reason to point it out.  With other family members I would be quick to call out inappropriate language, whereas with strangers I might be more likely to let it go, depending on the situation.

What if we overhear it at work?

This is probably the context that is most likely to cause challenges.  I recently read a post on Dangerous Voyage about a colleague using the term “retard”.  Clearly the use of the term was offensive and inappropriate, but to be honest, I doubt I would have said anything in that situation.  However, had a colleague used the term retard to refer to someone with an intellectual or other disability, it would be quite a different situation.

Still, even when highly inappropriate language is used, multiple factors come into play.  Is the stigmatized language being used to discriminate against a disadvantaged group the target belongs to?  Would speaking up be likely to create positive change?  Is there a power differential that could lead to negative consequences not just for calling out the stigma but also simply because you’ve challenged them?  While it would be nice to think that we would take the moral high ground and challenge offensive language, pragmatic considerations often weigh heavily on us.

I work in mental health, and don’t hear a lot of slang terms used by colleagues, probably because of the level of familiarity with proper medical terminology.  What I do hear, though, is stigmatized descriptions, such as patients with borderline personality disorder being described as attention-seeking or manipulative.  In situations like this I would generally express my disagreement in interpretation of the behaviour, but I don’t think I’ve ever actually called anyone out on the underlying stigma.  Mostly that’s because I feel like it has little likelihood of bringing about change, but also for selfish reasons – I don’t want someone pissed off at me for calling out their BS.  I also feel that reinterpreting a client’s behaviour is actually more productive, not to mention client-centred, than calling out the professional on their bad attitude, which would likely result in them getting defensive.

What if it’s directed at us or others online??

Luckily I haven’t been the direct target of overtly insulting language online, which probably has a lot to do with my relatively limited social media presence.  The stigma that I’ve experienced has been more subtle than that, and has tended to happen in “real life” rather than online.  There have been multiple occasions where I’ve witnessed others in the mental illness community being targeted with this type of language, and they have reacted strongly to condemn it.  More of than not, though, this can get into a feeding the troll kind of situation that becomes very upsetting for the person targeted.  So how do we decide when to speak up and when to block and ignore?

Personally, I believe that people who are ignorant due to a lack of information are worth trying to talk some sense into.  People who deliberately choose ignorance are probably a lost cause.  They’re not going to listen to reason, and they’re probably going to actively fight back against attempts to get them to see the light.  Is that giving up?  Maybe.  But by picking our battles we can divert our energy to the areas where it’s likely to have the greatest effect.

Do words used as insults become disconnected from their original meaning?

I have a potty mouth.  Motherf***er tends to come flying out of my mouth inadvertently. When I use that word I’m not talking about incest and I don’t imagine anyone around me is likely to interpret it that way.  Canadian French has some quirky profanity related to the Catholic Church, such as câlice (chalice) and tabarnak (tabernacle).  So if I say “Tabarnak!  That crazy ass mofo just cut me off!” does the actual meaning of each individual word come into play?  Or maybe the original meaning begins to disappear, especially when terms are used in combination with other insults.

Donald Trump, particularly in relation to his bizarre Twitter behaviour, is often accused of poor decision-making, and mental illness-related terms get thrown around quite often by his critics. Personally my term of choice would be batshit crazy to describe his Twitter carryings-on.  Yet this is a situation there is a potential blurring of that line between insult and literal meaning, as some people do question whether he has a mental illness.  Personally I think that’s very unlikely, but it’s problematic if his erratic statements/behaviours are seen as being what mental illness looks like on a broader scale.  Regardless of one’s political affiliation, I don’t think that’s a good thing.

 

The simple answer to all of this would be to try to eradicate the use of these sorts of words entirely, but I’m not sure that will ever be possible.  Perhaps the next best thing is to focus our efforts in the areas where we can bring about change, and focus less on the language itself and more on the stigma and lack of information that underlies discriminatory language.

Book review: Be There For Me

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Book cover: Be There For Me by Faith Trent

Faith Trent explains that she wrote Be There For Me: An Insight Into My Journey With Depression to “1. Show sufferers they are not alone. 2. Provide advice and guidance for those trying to support a sufferer. 3. Try to remove some stigma around depression.”  At the time of writing she was in the midst of a depressive episode and was off work, and she thought writing would be a good way to make something positive out of something horribly difficult.

The author’s depression journey captures common elements shared by many of us living with depression.  When she first became depressed, she had no idea what was happening, especially since there was no identifiable trigger or reason for her to be depressed.  She was initially reluctant to try medication, a view that she’d picked up from her mother.  There are chapters devoted to various different features of her illness, including anxiety and self-harm.  For her, self-harm was a way to somehow legitimize the way she was feeling.

She describes what it feels like to live with depressive symptoms such as fatigue, apathy, poor concentration, and the pervasive shadow of guilt.  She also explains common thought patterns in depression, including self-doubting, feeling like a burden, and drowning in shoulds.  These are not textbook definitions, but rather descriptions of the subjective experience.

She writes about the challenges of parenting young children with depression, and how the illness makes the daily parenting tasks feel like a mountain that must be climbed.  She finds it hard to be fully present with her children, and she regrets the distance from them that has created.  She also crying in front of them.  I’ve always wondered, though, if there isn’t benefit in children seeing what mental illness actually looks like, and perhaps this helps to prevent the propagation of stigma.

She identifies the essential elements she has found for managing her illness: becoming aware of her triggers and early red flags of worsening illness, maintaining work-life balance, getting enough rest, talking to a close circle of friends, exercising, and doing things that make her happy.  When her illness hits hard, she says “it cripples my whole life…  It causes me to question every part of my life, doubt my value, and make me feel like I am a burden to all I encounter.”  This struck me as such classic depressive thinking.

As is far too often the case for those of us living with mental illness, the author has experienced stigma directly.  Some people made her feel “truly inadequate and small for suffering from something that I feel they didn’t believe was real. I was patronised and made to feel like I was making it up at times.”  It was disturbing to read that a teaching colleague of hers questioned whether she should be allowed to be at work because she might pose a danger to her students.  As a nurse I have faced questions about my safety to my patients, but somehow no one realizes (or cares?) that with depression most often the real risk is to ourselves.

The main focus of the book is breaking down stigma.  She concludes that the only way to do this is for people with depression to share their stories to counter the misconceptions others may have.  I wholeheartedly agree.

 

You can find the author on her blog Shatter the Stigma.

 

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.

Quora: Dumb and dumber

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Quora logo

I like to answer reasonable questions about mental health on the question-and-answer forum Quora, but often reasonable questions are hard to find.  Here are some of the dumb ones I’ve come across.

 

Question: Do you think it’s cowardice to think that people with borderline personality disorders are all evil?

Answer (the most frightening one out of several): Do you understand that the Personality Disordered person is the coward? These people refuse to take responsibility for their own actions and constantly manipulate others to exploit them for their resources, precisely because they are COWARDS. The PD’ed person uses all sorts of tools, techniques to avoid the effort it takes to exhibit and exercise conscience towards others and themselves in the home and in society.

Question: Would long term exposure to nature be a more effective treatment for depression compared to pharmaceutical medications?

Question: How is a bipolar manipulative behavior treated?

Question: Can meditation cause schizophrenia?

Question: Depression, anxiety, “personality disorders”, etc. can be healed naturally, so why do we tolerate a mental health system that is drug-based, and is failing people?

My favourite answer: They can be healed naturally? You are out of touch with reality.

Question: Does depression lead to materialism?

Answer: Depression … n .. materialism … no way …. It is another disease callled bipolar .. where materialism comes .. go to google for details

Question: Is depression just sad narcissism?

Question: Do bipolar people have coexisting autistic and psychotic traits?

Question:  It seems like lot of untreated people with severe schizophrenia eat out of the garbage, are unclean, and lacking sleep, but do not get sick like well people probably would. Do people with schizophrenia have stronger immune systems than most people?

Question: People with no real problems to tackle usually get depressed. Is depression a disease whose first symptom is laziness?

 

Are there any particularly stupid or bizarre questions you’ve seen/heard people ask about mental illness?

 

You can also check out my posts gems of ignorance from Quora and more from Quora on mental health.

Disclosing mental illness at work: The good, the bad, and the ugly

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person walking on a tightrope

If you have a mental illness and have a paid job or volunteer gig, chances are that at some point you’ll be faced with the question of whether to disclose your mental illness, and if so, how much to disclose.  Yes, there may be laws in place to keep employers from discriminating against mentally ill employees, but that doesn’t necessarily mean disclosing is going to feel safe or be free from negative repercussions.  And working as a nurse in mental health care, it’s become clear to me that all too often the people who should “get it” really just don’t.

After my first psychiatric hospitalization, I had no choice about disclosing my illness. The provincial College of Registered Nurses put conditions on my professional license, and required that my employer be informed of these conditions. My manager used this as an excuse to treat me like I was incompetent and dangerous.  I had decided that I might as well be open with my colleagues, and luckily they were super supportive. Without that support I don’t know know how I would have  been able to handle my manager’s passive aggressive BS.

At my next job, they were initially supportive when I got sick.  But that changed when I didn’t make a neat and tidy recovery.  After my third hospitalization in the space of just over a year, my manager tried very hard to block me from returning to work.  I had no idea what was happening or why it was happening, and when I found out I felt completely betrayed.  I felt desperate to leave that job, but that was made harder by the fact that managers gossip, and the talk about things they have no right to gossip about.  Thankfully my coworkers were amazing, although I did find out later there was some slightly inaccurate information that got passed around as gossip.

One of my current employers seemed to use my illness as an excuse to step up the psychological assault.  I had disclosed my illness as a defensive tactic because I was experiencing severe psychomotor retardation and I figured they would be petty enough to assume I was abusing drugs or something like that.  They then seemed to turn it around and used it as a weapon against me.

Under Canadian law, employers have an obligation to accommodate employees with a disability unless it causes undue hardship (and from what I understand the bar is set pretty high for what counts as undue hardship).  A year ago I had requested an accommodation from one of my employers, as I was grasping desperately for any possible measure to prevent the psychological attacks they were launching at me.  My request was supposed to be passed to the 3rd party agency that provides disability management services in keeping with what was laid out in the nurses’ contract.  Did that happen?  Nope.  Management and HR wanted to deal with it themselves, and given that they were the source of the problem, it went nowhere.

I’ve chosen to be open about my mental illness, although some of that is a positive reframing of the times when I really didn’t have any other choice.  I can’t think of a single instance when a colleague has given me a hard time about my illness, but managers have been an entirely different story.  I really can’t say that I have any advice to give others on whether or not to disclose at work.  It’s hard to predict how people are going to react, so I think all you can do is go with what feels right in your gut.  And despite the crap that I’ve had to deal with, I still think I made the right decisions for me.

Have you disclosed your mental illness at work?  What has your experience been like?

 

Photo by Leio McLaren on Unsplash