5/5 of us have Mental Health

Since it is exam time at my university, this video from the University of Alberta’s pharmacy students is particularly resonant.

I think they make an excellent point. Yes 1/5 of us may experience a mental illness at some point in our life but all of us have mental health and we all must look after it, just like we do with our “other” health.

Thanks to CBC for alerting me to this YouTube!

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Should we rename schizophrenia?

Over at Medical Daily, Stephanie Castillo has written an article about how some researchers want to rename the illness known as schizophrenia with the hope that it would lessen the stigma associated with it. It has an excellent discussion of the etymology of the word compared to the actual symptoms. She points out that (links in original omitted):

Schizophrenia wouldn’t be the only mental illness to undergo a name change. Multiple personality disorder, for example, is now referred to as dissociative identity disorder. Lasalvia and his team added that while these changes reduce stigma, and ultimately better the state of mental health care, there need to also be “parallel changes in legislation, services, and the education of professionals and the public.”

I do think that the article makes a decent case and I would be the first to admit that the words “schizophrenia” and “schizophrenic” have (unfortunately) very strong negative connotations in colloquial English. I have always been more on the side of owning those words and wearing them without shame rather than avoiding the stigma.

The thing is though, I am far from the only person who has to deal with this. While I am proud of my accomplishments, my outcome is unfortunately not the only outcome. While I enjoy challenging stigma by causing, well, a realization in people that perhaps their mental construction of what schizophrenia is when compared to seeing me as a person, I can completely understand a desire to not have to deal with that crap. Particularly when you just want to focus on getting well, functioning socially, getting/maintaining a stable job or whatever.

So what do you think? Should we rename the illness in hopes that it will make things easier for all of us? Should we not and make the word ours? What do you think?

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Why do only humans get Schizophrenia? Why not other creatures?

A really neat article from Scientific American caught my eye the other day. It noted that while certain mental illnesses could be, for lack of a better term, seen in animals, schizophrenia seems to have been a consequence of the evolution of the human brain. Excerpt:

But there’s at least one mental malady that, while common in humans, seems to have spared all other animals: schizophrenia. Though psychotic animals may exist, psychosis has never been observed outside of our own species; whereas depression, OCD, and anxiety traits have been reported in many non-human species. This begs the question of why such a potentially devastating, often lethal disease—which we now know is heavily genetic, thanks to some genomically homogenous Icelanders and plenty of other recent research—is still hanging around when it would seem that genes predisposing to psychosis would have been strongly selected against. A new study provides clues into how the potential for schizophrenia may have arisen in the human brain and, in doing so, suggests possible treatment targets. It turns out psychosis may be an unfortunate cost of our big brains—of higher, complex cognition.

I thought it was interesting, so I am hoping that the readers of the blog might think so too!

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Schizophrenia and Employment

At Psychcentral.com, Michael Hedrick discusses the struggle he and many others with schizophrenia face in trying to function in the modern economy. Excerpt:

The economy is hard for everyone but it’s even harder for a young person with schizophrenia.

A lot of the time, jobs are impossible because of the severity of a person’s symptoms. It’s either too stressful, or they have a hard time performing the necessary tasks, or they have strange behaviors that lead their employer to fire them. I know this all too well. That’s the reason writing is the perfect job for me. I’m only accountable to myself, I can work at my own pace, and I don’t have to worry about working with other people.

I sometimes feel that living with a severe mental illness is a full time job in of itself. Trying to manage my schizophrenia, even with the wonderful support of family and friends, can be difficult and trying. I am thankful that at least at present, I have found employment that while stressful at times, is a positive environment for me. Too many, don’t have such opportunities.

Mental illness’ stigma is bad enough, but can you imagine what it is like to have a disease that can make you feel “useless” because it is difficult because of symptoms and the side effects of medication to hold a steady job?

Even though we have made strides in raising awareness about mental health that I couldn’t have imagined when I was first diagnosed, unemployment for schizophrenia and other severe mental illnesses remains far too high. In my opinion, addressing this needs to be part of how we as a society address the issues of mental health.

A friend of mine has benefited from a program that helps put those with disAbilities into the workplace. Myself, I have benefited from understanding supervisors.  To better integrate, it may require employers and other stakeholders to be more flexible and understanding than traditional employment models. Things like flexible hours, the ability to do some work from home, and informed managers and supervisors are all things that help reduce the chronic unemployment of those with mental health issues.

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They are not just words

There’s an interesting end of the year article that came across my feed from NBC news about the harm that’s caused by our colloquial use of mental health terms to describe people in a pejorative fashion for abnormal behaviour. It’s a good read and an excerpt won’t do it justice. So, as a sample:

“When people use (psychiatric labels) in daily language, I think it is intended to deliver some sort of emotional context,” Maidenberg said. “It says that there is something wrong with you.”

Likewise, dubbing a generally moody person as “bipolar” or “schizo” is akin to saying that periodically fickle frames of mind are a clear hint of severe mental illness. In reality, schizophrenia causes people with the condition to experience delusions, hear voices and suffer from extremely disorganized thinking. And by definition, bipolar disorder includes periods of mania, marked by rapid speaking, racing thoughts and inflated self esteem, followed by crushing bouts of depression.

Bipolar disorder “is very different from the day-to-day mood swings that most people experience,” said Dr. Charles Reynolds, a professor of geriatric psychiatry and neurology at the University of Pittsburgh Medical Center. “There are very distinct differences between personality traits and (mental illnesses).”

There are always tensions between a technical definition and how it is used colloquially. But there are many problems in using mental health terms to describe erratic or unusual behaviour. Not least because of the usually pejorative use of such words like “schizo” and the fact that“weird” behaviour is not necessarily the result of a medical condition.

Perhaps what most disheartens me is that such unfortunate ill-applied uses emphasize that something is wrong with a person and completely ignore the central fact that there are positive treatments for many serious mental illnesses. There are even instances of those with mental illnesses avoiding treatment so that they don’t have to wear the label of their illness.  

I think that the image of mental illness has improved since I was diagnosed. My own self image has improved dramatically. I do think that we have a long way to go, especially with the more “scary” mental illnesses. That’s why we have to talk, have to share and most importantly live our lives without fear or shame.

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Mental Illness 20 years ago

Babylon 5 series creator discusses dealing with mental illness of main cast member Michael O’Hare

Those that know me know I am more than a bit of a Sci-fi geek. One of my favourite shows even today is the five year novel on television known as Babylon 5. As a teenager I was completely engrossed by it and even today, though it shows its age and budget, I still enjoy the provocative story involving the intersection of galactic politics and a space station in deep space.

Now, I generally try and separate my interests for the purposes of this blog, but even twenty years ago I was perplexed by the replacement after the first season of the station commander. At the time show creator and executive producer Joeseph Michael Straczynski (known as JMS online) would only comment that a change was needed, but that star Michael O’Hare and he had parted amicably and that it was a mutual decision.

The above YouTube video details JMS’s heart wrenching explanation  of how Michael O’Hare started suffering an unspecified psychosis and JMS worked with him to get the help he needed and protect his career. I am saddened that the story ends, like all too many of these cases, in tragedy. However, I admire the integrity of JMS and Michael O’Hare’s wish to make this public after Mr. O’Hare’s unfortunate passing.

When Babylon 5 was on television, I had not yet begun to show symptoms of my own psychosis but unfortunately they would begin in a few short years.  At the time, mental illness was highly stigmatized. In fact, when I was diagnosed I felt that I was having a death sentence passed on me. It wasn’t the death of the flesh that scared me, though I knew that could be a likely outcome. More than anything I felt that I wouldn’t have much of a life and for a while it seemed that this thought was true.

I like to think that the world has changed in the past 20 years with respect to mental illness. We talk about it more, though it still seems to make some people (at least in my experience) uncomfortable. I’d like to think that today Mr. O’Hare’s illness wouldn’t have to be kept secret, though I am concerned that social media and infotainment can lead to some ugly enabling of celebrities with mental illness.

But we are progressing and even though I considered JMS one of my heroes for his professional contributions, I admire him more than ever.  My words can’t do this act of kindess justice, so if you can, please watch!

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The (Sometimes) Hidden Strength Behind People With Mental Illness

I saw this article in the Huffington Post a while ago and have been meaning to post it. Chelsea Stephens does a wonderful job at exposing stigma and documenting what I view is the (sometimes) hidden strength of people succeeding against mental illness.

This excerpt really spoke to me:

3. Everything they do takes extra effort: Getting out of bed? Extra effort. Making breakfast? Extra effort. Going to work? Extra effort. Once a mental illness is well-managed, these things become easier. But anyone who has endured a mental illness knows that especially on low days, it’s next to impossible to make yourself go through the motions. When you don’t care about yourself or are too exhausted to fight, doing things that for anyone else would be a normal part of the day becomes even more difficult. Building up the willpower to actually do these things takes strength.

If you don’t have a mental illness, be grateful. If you do, don’t give up on yourself. I’m speaking from personal experience when I say that as difficult as it is, fighting your mental illness is probably the most worthwhile battle you’ll go through in your life. It might not be a quick or easy fight, but there’s nothing more important than loving yourself and making sure you achieve the happiness you deserve.

Again, the whole article is good so the usual “Read the whole thing” applies. For me, I remember when getting out of bed was one of the hardest things I have ever done. I often explain to people who are trying to understand my illness and how we all can cope is that I am affected by everything that would affect you, just to a far greater degree. I had to become better at managing stress and disappointment and it still can be a struggle some days.

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Double Standards regarding Celebrity Culture and Mental Illness

It has been a busy time at work for me. I’ve had a lot on my plate socially as well. This story in Maclean’s by Emma Teitel was trending in social media a few days ago. A family member brought it to my attention. I’m glad she did, there’s plenty in here worth considering.

I’d urge you to read the whole thing, but as an excerpt:

And yet the goodwill displayed toward Williams and his family has been tainted of late by the ill will displayed toward another mentally ill star: 28-year-old actress Amanda Bynes. Robin Williams may have fought depression “openly his whole life,” but he suffered mostly in silence. When he died, it seemed everyone wanted to know how someone so jovial and together on the surface could be so profoundly unhappy. Amanda Bynes seems neither jovial nor together. She is explicitly mentally ill. Yet, despite our promise to Zelda Williams, we don’t appear to care.

Delving into the depths of our celebrity culture is something that I lack the training and time to do. But I often have observed that we have a love/hate relationship with those we put on a pedestal. In some ways we dream that their lives are like the movies they star in. Where everything works out in the end after a heart to heart, the bad guy loses and true love wins out over everything. Yet we also like to comfort ourselves with the foibles of others. Somehow our own faults are lessened when we compare them to supposedly worse indiscretions.

I’ve stayed away from commenting on the fallout from the tragedy of Mr. Williams. For one thing, I didn’t think I could add much to the conversation. For another, it does hit pretty close to home. This article has prompted me to reflect on what’s different between society’s approach to the tragedies of Mr. Williams and Ms. Bynes.  

One thing strikes me as distinctive. The tragic suicide of Robin Williams did create a silver lining, small as it was when measured against such loss. I did sense a genuine attempt to reflect on the situation, that there can be tears behind the laughter and that not talking about mental illness and specifically depression can be fatal. But as much as I am hopeful some great good can potentially come from such sorrow, contrasting it with the situation with Ms. Bynes shows me some of the limitations to the potential good. I think many good conversations were had because of the misfortune faced by Mr. Williams and his family and friends. But those conversations, while a very good thing, did not prompt us as a society to confront some of our worse attitudes towards mental illness. Ms. Bynes unfortunately faces the brunt of such things.

Don’t get me wrong. As someone who has experienced many awkward silences from talking about my struggles with my own illness, I am all for conversation. But it is only a necessary step in a long journey. While we may never stop gawking at trainwrecks, perhaps there is enough progress in us to collectively recognize when our participation whether it is in social media or the 24/7 infotainment news cycle that we are making a bad situation worse.

I’ve said this before, I’ll probably and unfortunately be saying this the rest of my life. Mental illness is hell inflicted not only on an individual, but their loved ones as well. One of the worst things about it is the feeling of helplessness that comes with the territory. Your mother/father/sister/brother/son/daughter/friend/cousin/wife/husband is tormented and trapped by a disease, and there isn’t much that you can do. Yes you can help them get medical treatment, but you can’t always force them to take their meds or cooperate with the doctors.  It’s physically and emotionally draining and even when successful involves a commitment of years if not decades.

I wouldn’t wish it on anyone.

For all the struggles that I have been through, for all that my family and friends have been through to help me, I didn’t have my worst moments, nor the subsequent hard work of recovery in the spotlight of the media. I certainly did not have people publically making fun of my bizarre schizophrenia-caused actions.

I do want to end on a positive note. Back fifteen or so years ago, when I was first diagnosed, I thought my illness was a life sentence. It has slowly, sometimes painfully, gotten better over the past decade and a half. I realize that this may be cold comfort for Ms. Bynes and her family and friends. I wish that I had something better to say than this, but as slowly and agonizing it is that we progress, we still progress.

It gets better

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It’s the Thanksgiving holiday here in Canada, which always puts me in a reflective mood. It can be very  hard to be thankful when you are touched by mental illness. It can destroy families, friendships, careers, even lives. It also creates a barrier between those with the illness and those who have no experience with it. If someone has never contemplated that a brain can be as easily broken as a bone (and how that would work), it can be difficult to be able to create an understanding.  Even family and friends tend to struggle with this and they have direct personal experience.

Unfortunately, the only person who can get inside my head is me.

But at least for me, there is a lot I am thankful for. Some of it is silver linings. For example, I often say that my meds suck. They make me sleepy. They make it very easy for me to gain weight. I have to take them every day. But thanks to them, I am no longer a prisoner in my own mind, and with my coping mechanisms, I live my life.

And that in general is what I am most thankful for. A life. When I was first diagnosed, I was told not to expect too much from it. Through perseverance and thanks to a multitude of wonderful people in my life, I made something that I feel grateful for, even if it can be a struggle at some points.

So I am thankful. At least I try to be.

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Schizophrenia suffering not limited to those with the illness

Schizophrenia is a hard illness to deal with. With that understatement out of the way, I’ll double down on it with “and it can be very hard on families, friends and caregivers.” My battles with my illness have not been easy. It hasn’t been easy on my family either. Yet not a day goes by when I am reminded about how much easier it was and is for us. And I would never want any family to go through what mine did, let alone something far worse.

Today I was reminded by this article that came across my newsfeed. It is a report about a study done in the EU that among other things found that nearly three quarters of those caring for someone with the illness are doing it mostly or entirely alone. There’s a lot of food for thought in the article, so I would urge you to read the entire thing. Excerpt:

Although about one third of the carers report positive experiences of providing care, the survey also indicates that almost 4 out of 10 battle with feelings of being unable to cope with the ‘constant anxiety’ of caring and one third feel depressed. More than 1 in 10 carers worry about feeling isolated and experience strains in their social network because of the care they give.

The average age of the carers surveyed was 61 years old, with the majority (84%) caring for a son or daughter. Many express deep concerns about what will happen to their child when they are unable to care for them or are no longer ‘around’.

One of the things I try not to contemplate is where I would be without my family or friends. My mind has too many dark places as it is. And yet, as much as my family has been through, we are at a place where the worries excerpted are rather diminished.

As always, there is much to be thankful for. However, it also should remind us that Mental Health Awareness is not just about creating understanding for those with such illnesses but raise awareness about the struggles of all of those affected by it.

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