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No One Cares About Crazy People is Pulitzer Prize-winning and New York Times bestselling author Ron Powers’ exploration of his two sons’ journeys with schizophrenia, combined with a sweeping social history of mental health care and attitudes towards those with mental illness. He skillfully interweaves these separate threads, drawing the reader along from the early days of Bedlam to the tragic loss of one of his sons.
It’s heartbreaking to read about the toll that mental illness has exacted on the Powers family. The obstacles that arose in accessing care for sons Dean and Kevin are particularly concerning. The historical picture that’s painted is both eye-opening and frightening.
I first published this review several years ago, but it was a really good book, so I thought I’d post it again.
The social history of mental illness
Bedlam has made its way into the modern English lexicon, but its origins were in England in 1247. It was officially designated as a mental institution in 1666. Powers starkly captures the abuses that occurred at Bedlam and similar institutions, including overcrowding, poor hygienic conditions, use of shackles for prolonged periods, and physical and sexual assaults. Such practices were slow to change; even now, the mentally ill are often mistreated, particularly in correctional institutions. Powers deftly ties these elements together, giving the reader a strong sense of the connectedness between past and present.
Powers touches on social Darwinism and eugenics, which were practiced far more widely than is generally known. It’s unsurprising that forced sterilizations of the mentally ill were carried out in Nazi Germany, but Powers informs us that in the United States, an estimated 60,000 forced sterilizations of the mentally ill were performed in the 20th century. Between 2006 and 2010, 148 female sterilizations were carried out in the state of California. This practice wasn’t made illegal until 2014, a jaw-dropping reminder that truly, no one cares about crazy people.
Powers covers a broad range of 20th-century influences on mental health care in the United States, including the anti-psychiatry movement, “treatment” strategies such as lobotomies, and misguided beliefs that antipsychotic drugs such as chlorpromazine could “cure” schizophrenia. John F. Kennedy’s Community Mental Health Act began a wave of deinstitutionalization, which led to a ballooning of the homeless population and large numbers of mentally ill ending up in the criminal justice system. Powers points out that, in many ways, this approach criminalized mental illness, and the effects remain widespread to this day.
As any questioning parent might, Powers tries to identify factors that could potentially have contributed to both of his sons developing schizophrenia. Both Kevin and Dean were highly artistic and passionate about music, raising the as yet unsolved question of whether mental illness is linked to traits like artistic creativity or scientific genius.
In his teens, Dean was socially vilified after a female passenger was seriously injured when the car he was driving crashed. He was falsely accused of drunk driving and made into a sort of social pariah, and Powers suspects that the stress related to this incident likely contributed to the development of his son’s mental illness.
Powers raises the contentious issue of involuntary treatment. The precedent for modern legislation in the United States can be found in the era of former president Ronald Reagan; deinstitutionalization was a key aim and decision-making was placed in the hands of the courts rather than medical professionals. This can mean significant delays in accessing much-needed treatment.
Powers argues strongly that involuntary treatment should be more readily available before a mentally ill person reaches a crisis stage, as once they reach the point where they present a risk to self or others, it may be too late. He addresses anosognosia, a common symptom of schizophrenia experienced by both of his sons, which impairs one’s ability to recognize the nature of their illness and the need for treatment. This caused significant negative consequences in the Powers family, which Powers points out to strengthen his argument.
Powers’ account of his son’s illness journeys heart-wrenchingly captures the powerlessness that can go along with loving a mentally ill person. Kevin was initially diagnosed with bipolar disorder before the full extent of his psychotic symptoms unfolded; that led to a delay in getting him started on antipsychotic medication. Before his suicide, he saw his treatment team regularly, and was still passionate about his music and focused on the future. Not once did he speak openly to anyone of suicide, leaving those who loved him powerless to intervene.
Powers openly challenges the social stigma and lack of understanding regarding mental illness. He likens schizophrenia to cancer: “a predator without peer and impervious to cure”. He identifies numerous ways in which those with mental illness can contribute to their communities, and emphasizes the importance of having the right types of supports that can make that happen.
The book concludes with a powerful call to action:
The mentally ill people in our lives, as they strive to build healthy, well-supported, and rewarding lives for themselves, can show us all how to reconnect with the most primal of human urges, the urge to be of use, disentangling from social striving, consumer obsession, cynicism, boredom, and isolation, and honoring it among the true sources of human happiness. To put it another way: the mentally ill in our society are awaiting their chance to heal us, if we can only manage to escape our own anosognosia and admit that we need their help.
There are many voices that can contribute to the dialogue around mental illness. Embracing all of these voices can allow us to construct a more coherent social narrative regarding mental illness. No One Cares About Crazy People makes a strong contribution to that narrative by improving awareness and challenging stigmatizing beliefs. It will also resonate deeply with those whose lives have been touched in some way with mental illness.
No One Cares About Crazy People is available on Amazon (affiliate link).
I consider myself a mental health advocate, but what does that actually mean? It probably means different things to different people, but let’s chat about it.
What a mental health advocate is
Before we get to my definition, here’s what a couple of other sources have to say.
“Mental health advocates are heroes — individuals who do not wear capes, but who work tirelessly every day to share their stories and help those who are struggling. They take risks and show their vulnerability by telling their truth in hopes of encouraging someone else.“
Kristen Fuller, NAMI.org
“A mental health advocate is a person who provides support to those with mental illness. This can come in many forms, including providing emotional support and advice on dealing with their diagnosis.
Mental health advocates are not only the voice of those living with mental illness but also their hands. They listen, speak up for them, stand up for them, and fight alongside them.“
For me, a mental health advocate is anyone who’s starting and participating in conversations about the reality of mental health issues, including mental illness. Admittedly, that’s a pretty broad definition. Within that broad range of conversations, I see a few key areas of focus: in-group, out-group, and policy-makers/lawmakers.
This is something those of us in the mental health blogging community are already doing. We’re starting conversations to support others dealing with mental illness in talking about their own experiences. While it may not be immediately obvious that this is advocacy, I think it’s really important to create safe spaces where people can talk openly about mental illness. Having that support provides an important foundation for anyone wanting to broaden their reach and can help to counteract self-stigma, so I very much believe that in-group advocacy is an an important building block.
Even if interactions seem like a drop in the bucket, but when those little drops of support are happening every day across the blogosphere and other online communities, it adds up.
To challenge public stigma, it’s important to show people who aren’t dealing with mental illness what it’s really like in order to replace stereotypes with human faces. We can do that on a small scale simply by disclosing our own illnesses, even if we only do that selectively.
Sure, it’s important that some people are advocating for positive change on a larger level, but I think the small-scale work is just as important. Not everyone is going to have the desire or the capacity to be a major social media influencer, for example, and that’s totally fine. You don’t need to have 100K Instagram or Twitter followers do be an advocate.
Advocacy directed at policy-makers and lawmakers
To change the laws and organizational policies that make things harder for people with mental illnesses, we need people doing advocacy work directed at the people who make those laws and policies. There’s more on this in the post Political Advocacy to Challenge Mental Illness Stigma. This kind of thing is certainly not going to be everyone’s cup of tea, and there’s likely to be a whole lot of banging one’s head against a wall before any major change happens.
I suspect advocacy organizations are able to accomplish more than most individual advocates in this area. In the US, organizations like NAMI and Mental Health America are active in political advocacy, while in Canada, the Canadian Mental Health Association is the leading advocacy organization. While I think these kinds of organizations do important work, I do have some concerns about them consisting of people speaking for us rather than being us. I would like to see the boards of directors of these organizations heavily stacked with people who themselves have mental illnesses, but unfortunately, that doesn’t tend to be the reality.
Revealing one’s identity isn’t necessary to be a mental health advocate. Your story and how you use your voice matter; whether you use your actual name or a pseudonym doesn’t. Granted, if you’re doing in-person speaking engagements, that’s a different situation. Overall, though, I don’t think that choosing not to share your real name makes you any less of an advocate.
Only you can understand the repercussions that you might face by being open about your identity, so only you are in a position to decide whether or not that’s acceptable.
Then there’s self-advocacy. In my own head, I’m less likely to attach the “advocate” label to this, but self-advocacy is probably something most of us dealing with mental illness will have to do at some point in our journey. That might involve trying to get a doctor to pay attention to our symptoms, address side effects we may be experiencing, or do paperwork to allow us to access services or benefits. Getting onto and staying on disability benefits is almost certain to require a hefty dose of self-advocacy.
I wish it didn’t have to be like this, and I don’t think it should have to be. Health professionals really need to do better.
People advocating for us
Then there are legal advocates. Depending on where you live, mental health legislation may give you the right to have an advocate representing your interests. In the UK, this is called statutory advocacy, and the charitable organization Mind‘s website has more information on that. In British Columbia, the Canadian province where I live, people who challenge their involuntary detention under the Mental Health Act are able to have the free services of an advocate to represent them at a review panel hearing.
Are you a mental health advocate?
Being a mental health advocate, influencer, or whatever you want to call it can look however you want it to look. While you can look to others for ideas and inspiration, there’s no hierarchy or need to be “good enough.” Of course, it’s easy to fall into the comparison trap just like it is with any other social dynamic, but in my mind, wanting to support people with mental illness is good enough in and of itself.
Talking about something like mental illness that’s socially stigmatized takes a certain degree of bravery. Bravery doesn’t mean that it’s not scary or difficult; bravery means doing it anyway even if it does feel scary.
It’s easy to minimize our own capacity to make a difference, and that minimization might make you feel like no, you aren’t an advocate. But I say own the power you do have, and give yourself credit for difficult things. As Rachel Platten sings in Fight Song, “I might only have one match, but I can make an explosion.”
Do you see yourself as a mental health advocate?
Social Health Network has some great tools to support you in your advocacy work. It’s free to sign up, and you can use this invitation.
The post Way to Share Your Mental Health Story has links to a variety of places where you can get your story out into the world.
Everybody's been there, everybody's been stared down By the enemy Fallen for the fear and done some disappearing Bow down to the mighty But don't run, stop holding your tongue Maybe there's a way out of the cage where you live Maybe one of these days you can let the light in Show me how big your brave is Say what you wanna say And let the words fall out Honestly I wanna see you be brave With what you want to say And let the words fall out Honestly I wanna see you be brave Innocence, your history of silence Won't do you any good Did you think it would? Let your words be anything but empty Why don't you tell them the truth? Say what you wanna say And let the words fall out Honestly I wanna see you be brave Brave – Sara Bareilles
You can find more on mental illness stigma on the Stop the Stigma page.
In this series, I dig a little deeper into the meaning of psychology-related terms. This week’s term is atypical depression.
“Atypical features” is a specifier that describes individual depressive episodes. While the name suggests it’s not particularly common, that’s not actually the case. The atypical name comes because of the way it differs from depression with melancholic features.
Symptoms of atypical depression
In addition to meeting the criteria for a major depressive episode, the atypical features specifier requires the first of the following symptoms as well as at least two others:
- mood reactivity to pleasurable stimuli or positive events
- increased appetite or significant weight gain (as opposed to decreased appetite and weight loss in melancholic features)
- increased sleep (as opposed to early morning awakening in melancholic features)
- feelings of heaviness in the limbs that has a significant impact on functioning (aka leaden paralysis)
- a pattern of longstanding sensitivity to interpersonal rejection
In the world of psychiatry, the term “neurovegetative symptoms” refers to depression’s impact on sleep, appetite, and weight. The increased sleep and appetite with atypical features is sometimes referred to as reversed neurovegetative symptoms (i.e. a reversed pattern from melancholic features).
Atypical features first showed up in the DSM with the release of the DSM-IV back in 1994. There’s been a fair bit of debate around the criteria and whether it constitutes a distinct illness from melancholic depression. While the DSM requires mood reactivity for an atypical features diagnosis, some researchers have argued against that.
One figure I came across said that between 15-29% of patients with depression have atypical features. It’s particularly common in people with bipolar II disorder and persistent depressive disorder (formerly known as dysthymia). Atypical features are more common in females, and the age of onset tends to be younger than in people with other presentations of depression. Almost 2/3 of people who have atypical features in a given depressive episode have a repeat of atypical features in their next episode.
People with atypical features are more likely to have a history of sexual abuse or neglect (research results are less clear re. physical abuse) versus those with non-atypical features. They’re also more likely to experience suicidal thinking and suicide attempts, as well as greater functional disability.
People with atypical features are more likely to have comorbid conditions, and in particular panic disorder, social anxiety disorder, or bulimia, compared to people with non-atypical depression. Rates of substance abuse are also higher.
While melancholic depression often involves a hyperactive stress hormone system (the hypothalamic-pituitary-adrenal axis), that’s not the case in atypical depression, and an underactive HPA axis has been observed in some patient with reversed neurovegetative symptoms. Differences in blood perfusion to certain areas of the brain have been observed in atypical vs non-atypical depression.
Treatment specific to atypical features hasn’t been as well researched as treatment of melancholic features. Monoamine oxidase inhibitor (MAOI) antidepressants are about twice as effective as tricyclic antidepressants (TCAs) in this patient population. However, MAOIs are more likely to cause side effects and require limiting dietary tyramine intake, so they’re not generally used as a first-line treatment. Fluoxetine has shown positive results in some fairly small studies. Bupropion (Wellbutrin) may be a good first-line choice; it affects the neurotransmitters norepinephrine and dopamine rather than than serotonin and tends to be more activating than SSRIs.
People with atypical features don’t appear to respond as well to electoconvulsive therapy (ECT) as people with melancholic depression. In terms of psychotherapy, cognitive behavioural therapy (CBT) has been found to be effective.
I’ve always tended toward melancholic features, and I’ve never had atypical features with my own depression. When my sleep and appetite are affected, they’re always decreased rather than increased.
Is atypical depression something that you’ve ever experienced?
- Cristancho, M. A., O’reardon, J. P., & Thase, M. E. (2011). Atypical depression in the 21st century: Diagnostic and treatment issues. Psychiatric Times, 28(1), 42-47.
- Łojko, D., & Rybakowski, J. K. (2017). Atypical depression: Current perspectives. Neuropsychiatric Disease and Treatment, 2017(13), 2447-2456.
- Matza, L. S., Revicki, D. A., Davidson, J. R., & Stewart, J. W. (2003). Depression with atypical features in the National Comorbidity Survey: Classification, description, and consequences. Archives of General Psychiatry, 60(8), 817-826.
- Nelson, E. B., & McElroy, S. L. (2003). Atypical depression Puzzled? How to piece together symptoms and treatments. Current Psychiatry, 2(4), 13.
The Psychology Corner has an overview of terms covered in the What Is… series, along with a collection of scientifically validated psychological tests.
In this series, I dig a little deeper into the meaning of psychology-related terms. This week’s term is enhanced cognitive behavioural therapy, or CBT-E.
I first heard of CBT-E recently in a post by Burnie of Quash Stigma Not Fat; it was a form of therapy she had done to treat her anorexia nervosa. I was curious to learn what that involved, and in this post I’ll share what I discovered.
CBT-E was developed at the Centre for Research on Eating Disorders at Oxford (CREDO) based on a transdiagnostic view of eating disorders. According to this transdiagnostic view, the processes that are involved in maintaining an eating disorder are very similar across eating disorder diagnoses.
Treatment is divided into four stages. Stage one, “starting well”, involves the therapist and client developing a mutual understanding of the client’s ED and stabilizing their pattern of eating. The brief second stage, “taking stock”, involves reviewing progress and planning for the main stage of treatment, which is stage three. Stage three addresses core eating disorder issues like body image, dietary restraint, and the connecting between events, moods, and eating. The emphasis is on the issues that are contributing the most to the maintenance of the particular individual’s ED. Towards the end of stage three, the focus shifts to dealing with setbacks, and in stage four, the emphasis is on the future and maintaining positive changes.
Things addressed in treatment
In stage one, the therapist creates a case formulation collaboratively with the client, identifying processes that are serving to maintain the client’s eating disorder that will be addressed in treatment. The pie chart below represents an example formulation with the main section of the pie, over-evaluation of shape and weight and their control, further broken down into the different ways it manifests.
Throughout treatment, patients are supposed to do real-time self-monitoring, recording everything they eat or drink (descriptions, not calories), what was going on at the time, and any compensatory strategies used (like laxatives or vomiting). The idea is that identifying what’s happening in the moment can help with making changes to behaviours that feel automatic or out of control. Body-checking behaviours are also monitored.
A regular eating schedule is established, with 3 meals and 3 snacks each day, and not going more than four hours without eating. Patients are also encouraged to practice eating socially. Weighing is done weekly, and patients are encouraged not to weigh themselves outside of that.
For patients who binge, work is done on urge surfing, engaging in behaviours that aren’t compatible with binging and serve as a distraction (like going for a walk) or doing things that make binging less likely (like leaving the kitchen). Binges are analyzed to identify triggers, like breaking a dietary rule, being disinhibited, under-eating, or negative mood or events.
Treatment addresses issues like judging self-worth based on body shape, preoccupation with thoughts about shape/weight and food/eating, body weight and shape checking, body avoidance, labelling mood states as “feeling fat”, rigid rules and checking around eating, secondary shame and guilt related to binge/purge behaviours, triggers for binges, and compensatory strategies like laxative/diuretic use and over-exercise.
CBT-E can be delivered on an outpatient, intensive outpatient, or inpatient basis. The length of treatment varies, ranging from 20 sessions over 20 weeks to 40 sessions over 40 weeks. The early sessions are held twice weekly, and then the sessions in stage four are more spread out. For patients who are underweight, the aim is to get them to a place where they’re making the decision for themselves to regain weight rather than have the decision forced onto them.
Standard CBT-E is delivered in a focused form that addresses the eating disorder psychopathology, but there’s also a broad form that incorporates work on perfectionism, low self-esteem, and interpersonal relationship issues. This addresses topics like preoccupation with thoughts about performance, checking focused on deficiencies in performance, having a sense of repeated failure, overgeneralizations, and cognitive biases.
For people with binge eating disorder, one of the CREDO researchers has published a CBT-E self-help book called Overcoming Binge Eating.
In studies of adults who weren’t significantly underweight, about 2/3 of patients receiving CBT-E made a full recovery, and that recovery tended to be well-maintained. According to the cbte.co website, the response rate is “somewhat lower in patients who are substantially underweight.” CBT-E has also demonstrated effectiveness in adolescents.
So, that’s CBT-E in a nutshell. It sounds like the biggest difference between this and standard CBT is the transdiagnostic model that considers all eating disorders to share the same basic processes. For those of you who have eating disorders or are in recovery, is CBT-E something you’re familiar with? How does it compare to any forms of treatment that you’ve been through?
- Murphy, R., Straebler, S., Cooper, Z., & Fairburn, C. G. (2010). Cognitive behavioral therapy for eating disorders. Psychiatric Clinics, 33(3), 611-627.
The Psychology Corner has an overview of terms covered in the What Is… series, along with a collection of scientifically validated psychological tests.
The post What Is… CBT-E (Enhanced CBT for Eating Disorders) appeared first on Mental Health @ Home.more
When it comes to expectations, my preference is to aim low and then be happy when I meet or exceed them. I know that approach doesn’t work for everyone, so I wanted to explore when it may or may not work. I think it might help to break the expectation/doing/result process into steps.
This process is by no means scientific; it’s really just me pulling something out of my ass.
- Identifying something to do
- Evaluating the desire to do it
- Anticipating the reward that will result from doing it
- Anticipating the effort/resources/spoons that will be necessary to do it
- Making a decision whether to do it or not
- Setting your expectations and navigating any psychological messiness that may arise
- Find motivation to take action
- Take action (which is limited by capacity)
- Evaluate reward
- Evaluate outcome vs. expectations
Making a decision
The first 5 steps are about making a decision about what you want to do.
I see step 2 (evaluating the desire to do a thing) as related to but distinct from motivation. If we’re talking about potentially going from A to B, I see desire as caring about B being a place to get to, and motivation as the oomph to actually move you from A to B. Evaluating desire is where I see apathy coming into play; if I don’t give a rat’s ass about place B, that’s a different thing from wanting to get to B but not having the motivation to make it happen.
Steps 3 and 4 involve a combination of self-awareness and making guesses about the future when it comes to reward and capacity, which we’ll get to shortly.
At step 5, you might just decide fuck it, you can’t be bothered, and just move on. How willing you are to say fuck it probably has a lot to do with what you expect of yourself more generally as well as what you think others expect of you. The inner critic might not be interested in accepting fuck it as an option.
Okay, so you’ve made the decision that you do want to move from point A to point B, and now it’s time to figure out what you expect from yourself on that journey and where you expect to end up. All kinds of psychological messiness could get in the way here, including perfectionism, procrastination, and other forms of self-sabotage.
The reality gap is the difference between our expectations and reality. The bigger the reality gap, the more we suffer. We can’t necessarily control reality, but we can adjust our expectations. When expectations are set so high that there’s guaranteed to be a substantial gap between reality and those expectations, that’s likely to sign you up for a big dollop o’ suffering.
The APA Dictionary of Psychology defines motivation as: “the impetus that gives purpose or direction to behavior and operates in humans at a conscious or unconscious level… Motives are frequently divided into (a) physiological, primary, or organic motives, such as hunger, thirst, and need for sleep; and (b) personal, social, or secondary motives, such as affiliation, competition, and individual interests and goals.”
Motivation can be intrinsic (i.e. we’re motivated to do something for our own sake) or extrinsic (we’re motivated to do it for other people’s sake). Intrinsic motivation is likely to give you a stronger boost, but extrinsic motivation may be more accessible.
Motivation doesn’t necessarily have to precede action; sometimes it comes after acting, and other times it doesn’t come at all. But if you wait until you feel motivated before doing things, you may just end up waiting forever.
Illness can do a lot to limit capacity. Whether your mental illness is acting up, you’ve got a migraine, or you’re having a chronic pain flare, your capacity in the present may be significantly less than your capacity when you’re doing your best.
I see a few factors coming into play when anticipating capacity. One is self-awareness; maybe you’ve learned from past experience that on migraine days, you need to hide out in a dark hole and do absolutely nothing. Another is where you are on the spectrum of resistance to acceptance. Acceptance can mean knowing that depression limits your energy and finding workarounds to help you conserve energy, while resistance can mean not wanting to let depression limit what you can do. The inner critic may have a lot to say about whether or not you give yourself permission to limit your expectations.
If you’re regularly overestimating your capacity, you’re probably setting your expectations higher than what you’re able to achieve. On the other hand, if you’re regularly low-balling your capacity, you may end up doing less than you’re actually capable of.
The neurotransmitter dopamine and the region of the brain called the nucleus accumbens play a role in the reward system, although they’re not the only kids in town. This system involves multiple phases: appetitive (reward-seeking) and consummative (reward-experiencing), and then learning based on those experiences.
Anhedonia (reduced ability to experience pleasure) can be a symptom of mental illnesses like depression, bipolar, schizophrenia, and schizoaffective disorder. It can affect both reward-seeking and reward-experiencing, and the longer it goes on, the more you become conditioned not to expect much of a reward in the future. If I didn’t care much about getting to point B in the first place, and then when I got there it was meh, I’m going to be even less likely to give a rat’s ass about moving from point A to point B in the future.
Evaluating outcome vs. expecations
You may evaluate the same outcome positively or negatively depending on expectations. If you got 80% on a test but expected 90%, you’ll probably be disappointed. On the other hand, if you got 80% but only expected 70%, you’ll probably be happy.
If you expected perfection, unless you got 100% on that test, you’re guaranteed to be disappointed. Let’s say the test was on technical aspects of blogging, and in your mind, 85% would be the bare minimum to be a “real” blogger. With your 80%, it’s hello, impostor syndrome.
Where do things get messy?
What might work best for a given person probably depends on what their rate-limiting step is. In chemistry, that’s the step that does the most to slow the entire reaction down.
For me, the rate-limiting step is capacity. Depression slows down my brain and my body, and that limits what I can do. I’ve gotten to a place of acceptance around that, and I’m generally pretty good at evaluating where I’m at with capacity.
The other major factor for me is anhedonia fucking with the whole reward thing. When I’m at point A, I don’t give a rat’s ass about point B. Then if I get to point B, I still don’t give a rat’s ass about it. If I have a reason to do something (e.g. the guinea pigs need their cage cleaned), I can drum up the motivation to make it happen. Motivation is generally not a rate-limiting step for me. Psychological messiness can play a role, but if I’m sick enough that my head is really messy, that’s affecting my capacity too, and that still tends to be the rate-limiting step.
I think keeping expectations low works well for me because of that combination of factors. Now it’s your turn—which steps cause you the most problems? Do you tend to set your expectations on the high or low side?more
Thanks to everyone who filled out the survey last week on mental illness and hygiene. Now it’s time for the results!
In order to protect privacy, I’m being somewhat vague in reporting some of the responses. I won’t say exactly how many people responded, but I think it was enough to make the results meaningful.
1) How often do you take a shower or bath, on average, at times when you’re experiencing symptoms of your illness?
- 1/3 responded one or more times per day
- 1/3 responded every 2-3 days
- 1/3 responded every 4 days or less
2) How often do you think you’d take a shower/bath if mental illness wasn’t an issue?
- 60% of people said one or more times per day
- 40% said every 2-3 days
2) What the main thing that typically prompts you to take a shower/bath?
The top three reasons were:
- I get concerned I might smell or look unclean
- I want to maintain good/decent hygiene
- I feel like I should maintain good hygiene even though I don’t want to or don’t care
4) When particularly unwell, do you ever leave showering/bathing until you smell badly enough that it grosses you out?
- 60% of people said never
- 16% said yes, occasionally
- 24% said yes, regularly
5) How often do you brush your teeth?
- 44% multiple times a day
- 32% once a day
- 24% less often
I realized after looking at the results that I should have asked this question differently to differentiate frequency during illness vs. wellness, and I should have given better options, but it is what it is. I’m actually rather impressed that so many people stay on top of this.
6) Is your frequency of face/body hair management activities (shaving, plucking, etc.) impacted when your mental health isn’t good?
Of those that do this typically:
- 62% said the frequency decreased
- 38% said it stayed the same
It would have been interesting to break this down by gender. As a female, when I don’t pluck my eyebrows or shave my legs/armpits, it’s not especially noticeable to others, but for guys to go furry is much more overt.
7) When unwell, do you sleep in your daytime clothes or spend the day in your PJs?
- 40% regularly
- 28% sometimes
- 32% rarely or never
8) How does your mental illness influence your hygiene?
I realized I should have set up the responses differently, but anyway, having less energy and caring less were about equal as the top two impacts. Almost 30% of people said it makes showering/bathing feel unpleasant. While in most cases the issue was decreased hygiene, in some cases there was a hyper-focus on maintaining hygiene.
9) Anything else you’d like to share?
I’ll broadly paraphrase some of the points that people shared:
- Good hygiene can help you to feel good, which can aid in recovery
- When dealing with multiple mental illness, hygiene can go overboard or get worse depending on which illness is having a flare.
- It can be hard to make peace with the fact that doing the best you can doesn’t necessarily get you at the level you want to be.
- Anxiety can make the idea of being dirty distressing.
- Hot water can help with pain, and that can make showering a good thing.
- Starting to get itchy can be a prompting factor for showering.
- Living with someone can be a motivating factor for maintaining hygiene.
- Washing at the sink can be easier than showering.
None of this really surprised me. I suspect diagnosis makes a difference, with depression, schizophrenia, and schizoaffective disorder likely being the major offenders getting in the way of hygiene. Regardless of diagnosis, though, I think the results pretty clearly show that we’re not alone in our struggles, and I think it’s awesome that so many people were willing to share about a topic that’s not really socially acceptable. Thanks to all who responded!
What do you think of the results? Were there any surprises for you?more
Mental illness can be a barrier to hygiene, and I’m curious how much of a barrier it is for people, so I came up with a survey.
I want people to feel comfortable answering honestly, so unlike previous surveys I’ve done, cumulative results won’t be visible after you complete the survey. When I publish the results, I’ll group responses together as needed so it won’t be apparent if only a couple of people picked a particular response. I’ll leave the survey open for a week and then do a post with the results.
Depression definitely affects my hygiene. I shower less often, and when things are really grim, I only shower about once a week, with the determining factor being when I get so icky that I’m grossing myself out or when my hair gets so crusty that it hurts when it moves. Lately, I’ve been changing into pyjamas at bedtime, but not so long ago I was regularly sleeping in my clothes because changing just seemed unnecessary. I only wear comfy clothes these days, so clothes or PJs doesn’t really make that much difference. My tooth brushing is minimal, which is probably going to come back to bite me in the ass, but caring about a nebulous future is even harder than caring about the present moment.
For me, caring is much more of an issue than energy. If I gave half a fuck, I would have sufficient energy to maintain normal levels of hygiene, but I’m very short on fucks to give.
If you’re unable to view or respond on the form above, you can complete the survey here. I know last time a fair number of people weren’t able to access the survey, and I never did figure out why that was. Hopefully it won’t be an issue again this time.more
Anhedonia, which refers to decreased ability to experience pleasure in normally pleasurable things, is a core symptom of depression; in fact, you can get a diagnosis of major depressive disorder without depressed mood if you have anhedonia. Anhedonia is a part of the melancholic features specifier for depression, as opposed to atypical features, which involves mood reactivity to pleasurable stimuli. It can also be one of the negative symptoms of schizophrenia. People with major depressive disorder who experience anhedonia tend to respond less favourably to treatment than those who don’t.
While serotonin circuits in the brain play a role in mood, dopamine and the nucleus accumbens region play a big role in pleasure and reward. I was curious to see what science has to say about how anhedonia happens in the brain, and this post is the result.
Pleasure and anhedonia
Anhedonia can affect different aspects of how we relate to pleasure. The reward pathway involves three phases: anticipatory (the motivation to seek out rewards), consummatory (finding experiences pleasurable in the moment), and satiety (learning after the consummatory phase). The graphic below illustrates these phases. The appetitive phase dominated by wanting a reward experience, the consummatory phase dominated by liking the experience, and a satiety phase dominated by learning to associate consumption with pleasure. We make predictions for future experiences based on these learned associations.
In people with depression, there tends to be a reduction in capacity in the wanting and liking phases, as well as impairment in reward learning. Essentially, the whole kit and caboodle is affected, although some studies have shown that the liking phase isn’t impaired to the extent that the wanting and learning phases are.
That actually corresponds fairly well with my own experience. Something that’s normally yummy to eat may still taste reasonably good when I’m anhedonic, but I’m not very interested in seeking that reward out in the first place or trying to repeat it once it’s happened.
Pleasure and the brain
There are multiple areas of the brain that are involved in the appetitive/wanting phase, including areas of the the cortex (the more advanced part of the brain) and the limbic system (a more primitive part of the brain). The consummative/liking phase appears to be more focused in a small area of the nucleus accumbens, which is part of the limbic system.
Both dopamine and opioid circuits play a role (the brain makes natural opioids known as endorphins). The neurotransmitters glutamate and acetylcholine may also play a role, which might explain some of the benefit that the drugs ketamine and scopolamine have shown in people with depression.
I’ve included the diagram below not because I expect the details of it to be meaningful to anyone, but rather to give a general sense that reward circuitry is complex and there’s a whole lot of different places where things could go wrong. The complexity is one of the reasons why there’s a lot that science hasn’t figured out yet; another issue is that animal models don’t necessarily translate that well to the human experience of anhedonia.
The nucleus accumbens
A recent study found changes in functional connectivity of the nucleus accumbens, a key part of the reward system, in people with major depressive disorder vs. healthy control subjects. Neural activity involves both wiring and firing, and functional connectivity is the firing part. Researchers observed reduced connectivity to several brain regions. In particular, people with more severe anhedonia had reduced functional connectivity between the nucleus accumbens and an area called the anterior cingulate cortex compared to people with less severe anhedonia.
Some researchers have suggested that the amotivation that SSRI (selective serotonin reuptake inhibitor) antidepressants can cause is related to the way that they affect the striatum, an area of the brain that’s involved in reacting to both aversive and pleasurable stimuli. It can be a good thing if antidepressants are lowering our reactivity to negative stimuli, but not so good if they’re also lowering our reactivity to positive stimuli.
For me, the pattern of anhedonia over time has been consistent with it being illness-related rather than being negatively affected by medication.
What does any of this mean?
The TL;DR is that anhedonia in depression is complicated, and science has some ideas but hasn’t figured it out yet. I feel like anhedonia is something that can make a substantial difference in quality of life. It’s not as painful in the moment as low mood, but it can suck all the light right out of life. It seems like a difficult thing to address, too, because the absence of positive feelings doesn’t give you a lot to seek your teeth into. When doing supposedly positive things doesn’t generate a reward, continuing to do them seems a bit like pissing in the wind, which is perhaps why I’ve never found the CBT concept of behavioural activation to be particularly useful for me.
Is anhedonia something you experience, and if so, what is that like for you?
- Liu, R., Wang, Y., Chen, X., Zhang, Z., Xiao, L., & Zhou, Y. (2021). Anhedonia correlates with functional connectivity of the nucleus accumbens subregions in patients with major depressive disorder. NeuroImage: Clinical, 30, 102599.
- Rømer Thomsen, K., Whybrow, P. C., & Kringelbach, M. L. (2015). Reconceptualizing anhedonia: Novel perspectives on balancing the pleasure networks in the human brain. Frontiers in Behavioral Neuroscience, 9, 49.
- Sternat, T., & Katzman, M. A. (2016). Neurobiology of hedonic tone: The relationship between treatment-resistant depression, attention-deficit hyperactivity disorder, and substance abuse. Neuropsychiatric disease and treatment, 2016(12), 2149-2164.