Bipolar 2 From Inside and Out

Posts tagged ‘public perception’

Flap My Arms and Fly

Those of you who read my blog regularly know that I’m not a big fan of positive thinking memes. In fact, they have the opposite effect on me. Someone who claims that a positive attitude is all that I need to change my life is likely to get only a “pfui” from me. As a person with bipolar disorder, I sometimes have major depression, and no amount of thinking is going to pull me out of it. In fact, the only thinking I can do at times like that is likely only to pull me farther into the depths.

If affirmations and positive thoughts work for you, I say, good. If mindfulness and meditation are your jam, then I say, whatever works. But please don’t try to deny my perception of reality.

That perception is that there are some things that positive thinking can’t do. That there are some situations that are immune to positive thinking. That positive thinking can’t change the outcome of everything.

Admittedly, positive thinking can change one’s attitude toward one’s circumstances. One can choose, as my father did, to be determined, stubborn, and positive in the face of his diagnosis with multiple myeloma. It likely helped him live long past what his doctors expected.

But not everyone can do that, and maybe not everyone should. Elizabeth Kubler-Ross said that acceptance was the final stage of the process of dying, not the first. The same, I think, is true of grieving. Anger, denial, bargaining, and depression are natural responses to cataclysmic events, including diagnoses, and in this case, particularly diagnoses of serious mental illness.

Although my father was well-known for his “positive mental attitude” about his cancer diagnosis, I remember a time when he could not even say the word.  He swallowed it, leaving out the vowels: cncr. And I remember that at times he was in denial about his illness and tried to do things he was physically not capable of doing – even, at one point, walking down the short hall to the bathroom. Even positivity could not help him there.

I watch a lot of competition shows on TV – Chopped, Forged in Fire, etc. – and I often hear the contestants say that they are doing it to prove to their children that they can do anything they set their minds to.

A part of me always says, “Okay, then. Flap your arms and fly.”

I know that sounds cynical and bitter, but it’s also the truth. The contestant who was cut in the first round has not done what he or she intended to or believed he or she could do. After that, they espouse the more reasonable and attainable lesson that their children, or others, should try to follow their dreams and take that trial as a noble effort, even if it doesn’t end in victory.

I have bipolar disorder. There are some heights I can never fly to, no matter how hard I flap my arms. I know I will have to take medication for the rest of my life. I know that, even with medication, I will still experience mood swings. I know that I will never be able to really trust my moods – that a setback might send me teetering over the edge or a triumph might make me imagine that I can indeed fly.

And, you know what? I’m okay with that. What I’ve accomplished with the help of medication, therapy, and the support of my family and friends, is good and is good enough. My dreams are down-to-earth, not grandiose. I do not dream of flying, but of remaining as stable as I can, right here and now. I choose not to delude myself with unattainable goals.

My father didn’t think he was going to live forever, but he was determined to live as long as he could, and to enjoy what he could in spite of the pain. I think that’s as ambitious as someone with a catastrophic illness can get. I admire him for his sustained effort and his stubborn resistance to despair. I admire those of my friends – and there are some – who can choose not to be dragged down by the circumstances of life.

Maybe it’s different for me because my disorder by its nature involves a component of lowered mood. But my expectations are not to flap my arms and fly, but just to keep on keeping on.

I Can Hardly See the Scars

Scars from self-harm are reminders of dark periods in our lives, times when we felt too little or too much. Times when we thought that feeling physical pain could distract us from emotional pain. Times when we felt so numb that we self-harmed to reassure ourselves that we were still alive.

Tattoos can be a lot of things. They can indicate membership in a tribe, be a reminder of a happy occasion, commemorate the passing of a loved one, be a work of art, be a relict of a drunken night, espouse a cause, or have a personal meaning that no one else is party to.

Self-harm is something a lot of us have tried, in one form or another. And the scars produced by it have many meanings. They can be reminders that we lived through a really bad time or reminders that we chose a really bad coping mechanism. Some people look at their own scars and feel lucky to have survived. Some look and feel shame.

Now, a Philadephia tattoo studio, Crown and Feather Tattoo Co., is offering to cover up people’s self-harm scars with free tattoos. The service is so popular that the studio has had to hire more tattoo artists to keep up with the demand.

They call this effort “Project Tsukurou,” a word derived from Kintsugi, a Japanese art form that involves repairing broken pottery with resin and gold dust. I wrote about Kintsugi recently (Beautiful at the Broken Places, https://wp.me/p4e9Hv-Yj). Rebuilding oneself after a breakdown and thinking about making it a work of art was very empowering to me. Apparently, the tattoo artists and their patrons felt the same way.

I have scars from self-harm and I have tattoos. The tattoos don’t cover the scars but are located in close proximity. The scars have faded, nearly invisible now since the dozens of years since they were created. I am over that, healthier than that now. (Once someone asked me how I quit self-harm. I replied, “I didn’t need to anymore.”)

At first, I was ashamed of those scars. I tried to hide them with wide bracelets and watchbands. Later, I made my peace with them. They were now a part of me, a reminder of a time of despair and despondency. They were a reminder never to let things get that bad again. That there are things I can now do to alleviate the pain or the numbness, should it ever get that bad again anyway.

Mostly, I don’t look at the scars anymore. But my tattoos are right there next to them. One is a semicolon, a symbol and reminder of suicide prevention. (See projectsemicolon.com for more information.) The other is the :): symbol for bipolar disorder. When I look at these tattoos, I think of the reality of both my disorder and my new, better, life-saving coping mechanisms.

Of course, tattoos are not a choice that everyone is prepared to make. Some people feel that they shouldn’t modify their body in that way. But for someone who has already modified their body with scars of self-harm, tattoos can possibly give them back a measure of dignity and pride that their self-harming days are over. They can look at their bodies and see, not mutilations, but life-affirming works of art.

So far, the only tattoo studio that I know of performing this service for free is the one in Philly. But most tattoo studios are used to covering over regretted tattoos with new ones. They should be able to cover the scars of self-harm as well. And if they don’t do it for free, well, one could think of the money as an investment in healing or moving forward or creating a work of art where once there was only a reminder of pain.

 

Reference:

https://scoop.upworthy.com/tattoo-studio-covers-up-self-harm-scars-for-free-it-totally-changes-your-outlook?fbclid=IwAR0sjb_G3sS_P3FsXmImsBtRaIrFkak_8OHjcNJJjocnnSrrL1X-bBqgSlc

The Worst Side Effect of Psychotropic Drugs

I’ll admit that I’ve had a lot of side effects from the various psych meds I’ve taken over the years, and some of them were bad enough to make me ask for something different. There’s been insomnia, sleeping too much, twitchiness, vivid nightmares, and others. But as far as I can see, there are only two side effects that would make me completely quit taking a prescribed medication, even before I could ask my doctor about it.

The first is Stevens-Johnson Syndrome. It’s what they mean when they say on TV commercials, “a fatal rash may occur” (I didn’t even know rashes could be fatal). Indeed, your skin starts to come off. I think it’s always a bad sign when your insides suddenly become your outsides, like in that Simpsons episode where everyone turned inside out. Among the medications that can cause SJS are anticonvulsants, antipsychotics, and other psychotropic drugs, at least two of which I take daily. When he prescribed them, my psychiatrist told me to stop taking the meds instantly if I got a rash around my mouth and nose, and go to the emergency room. It’s that serious.

Apparently, the anti-smoking drug Chantix and maybe some others can also cause SJS, which I guessed from the “fatal rash” warnings on the commercials and later confirmed. I idly wonder if the rate of Stevens-Johnson has increased now that more of these drugs are being used.

The other side effect that I truly fear is tardive dyskinesia. Tardive dyskinesia means involuntary, repeated muscle movements, which can affect the face (tics, twitches, grimaces) and other parts of the body (legs, arms, torso, and fingers). Think John Nash in A Beautiful Mind. These movements appear after taking medications such as antipsychotics. Worst of all, the movements may become permanent and a number of people are disabled because of them. There are now medications that treat tardive dyskinesia, but I still wouldn’t want to have it.

Yet, what is the most feared, the most despised side effect of psychotropic medications?

Weight gain.

I see countless comments in online support groups asking about weight gain on particular medications and posts that say such-and-such a drug caused weight gain. A number of people post that they will not take these medications, or will stop taking them, because they can cause weight gain.

Admittedly, weight gain is not often a good thing. It can certainly lead to other health problems. But my point is that many people are more concerned about their appearance than their mental health. 

I’ve struggled with my weight too over the years, and I have written about it (https://wp.me/p4e9Hv-7o). But I’ve struggled more with my mental health, which could kill me just as surely as obesity.

There is vast stigma in our society surrounding fat people. That’s undeniable. Fat people are stereotyped as lazy, sloppy, unattractive, unhealthy, and more. Despite recent body-positivity messages and a few clothing commercials that now feature more plus-size women (I haven’t seen plus-size men), this stigma continues virtually unabated.

Of course, there is stigma around mental illness, too. Those with mental disorders are stereotyped as out of control, violent, dangerous, suicidal, and a burden on society. I can see that people are reluctant to add the two stigmas together.

But honestly, is weight gain so very bad compared with the chance to alleviate the misery and suffering that accompany serious mental illness (SMI)? Personally, I prefer to weigh more and not live my life in despair and hopelessness.

Some of the medications I’m on can cause weight gain. Some of them can cause Stevens-Johnson Syndrome or tardive dyskinesia. Fortunately, weight gain is the only side effect I’ve had, and I can live with that. Stevens-Johnson is potentially deadly and tardive dyskinesia is potentially permanent. There are things I can do about my weight if it really concerns me, or I can chalk it up to a side effect of being content, stable, and productive.

Frankly, of the possible side effects, I fear weight gain the least.

Systemic Breakdown and Involuntary Commitment

I don’t often review books in this blog, but Lynn Nanos has written one that has caused me to think long and deeply about an important topic, so I felt compelled to share my take on it.

The book, Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry, deals with the involuntary commitment of people who experience schizophrenia, psychosis, some mood disorders, and anosognosia (lack of understanding or awareness of one’s own mental condition). Nanos lays out her thesis logically yet compassionately, with lots of references to back up her opinions.

What Nanos says is that involuntary commitment should be more widely available and easier to accomplish. Her experience as a clinician in Massachusetts involved many instances when she was involved with administering “Section 12” orders for involuntary commitment.

I’ll confess my bias up front. I’ve always been leery of involuntary commitment. As a person with bipolar disorder which was long untreated and un- or misdiagnosed, I have suffered with the fear that I might be committed at some point in my life. I’m a great believer in civil rights and believe that patients should have the right to refuse treatment.

Nanos is changing my mind, at least in the case of psychiatric disorders which prevent victims from knowing their own needs and taking care of themselves. She makes an excellent case that schizophrenic and psychotic patients, especially those with anosognosia, are the most likely of all psychiatric patients to commit violence and be victims of violence. This she refers to as “dying with their rights on,” a powerful phrase.

As it currently works – or doesn’t – forced commitment often leads to a revolving door of hospital emergency department stays, early release from psychiatric units, and the patients who most need help being discriminated against by psych units that turn them away because of their potential for violence and the difficulty in treating them. This results in homelessness, overuse of emergency services, release to relatives ill-equipped to handle a schizophrenic or psychotic person, and other potential dangers.

Nanos thoroughly discusses Assisted Outpatient Treatment (AOT) and other versions of court-ordered therapy and medication. Though these strategies are not without their flaws, Nanos indicates that her experience with them is that they are substantially beneficial and reduce violent behavior significantly.

Breakdown does not imply that there are simple or one-size-fits-all solutions to the serious problems with emergency psychiatry. The part insurance companies and hospitals play in not supplying adequate treatment is not ignored.

Lest one think that this is a dry, academic tome, though, Nanos fills the book with empathetic and sometimes searing stories of people that the system has failed – both patients themselves and the victims of their sometimes violent behavior.

How has Nanos’s book affected my opinions on involuntary commitment and related areas? The criteria she recommends for the procedure are far from superficial: She posits that involuntary commitment should be used only for those who are actively schizophrenic or psychotic and are unable to recognize the nature of their disorder and are unable to care for themselves – especially if they have shown signs of violent behavior or serious threats. (“Unable to care for self” takes the place of the older “danger to self” and includes conditions like homelessness, malnutrition, etc., not just being suicidal.)

Do I now think that involuntary commitment and/or AOT should be easier to accomplish? Yes, with the understanding that easier does not mean easy. We’re still talking about people’s civil rights, and those should not be broached with serious thought and safeguards in place. But my own fears of being involuntarily committed are revealed to have been irrational, a product of my bipolar disorder.

Has the psychiatric “system” broken down to the point where involuntary commitment is a necessary and even a beneficial thing? The answer, sadly, is yes. Lynn Nanos’s Breakdown has convinced me of that.

 

Young Children and Involuntary Commitment

Involuntary commitment. In California, it’s a 5150. In Massachusetts, it’s a Section 12. In Florida, it’s the Baker Act. But right now, we’re talking about Florida. Whatever the Baker Act was meant to do, it wasn’t meant to do it to six-year-olds. Yet in Florida, a six-year-old girl was involuntarily committed for two days of psychiatric evaluation after a temper tantrum at school. The child has attention deficit hyperactivity disorder and a mood disorder.

According to CBS News, a sheriff filed a report, and a social worker stated the girl was a “threat to herself and others,” “destroying school property” and “attacking staff.” Duval County Public Schools told CBS that “‘the decision to admit a student under the Baker Act is made by a third-party licensed mental health care professional'” and that the response was “‘compliant both with law and the best interest of this student and all other students at the school.’”

Florida’s Baker Act was established around 50 years ago and allows authorities to “force such an evaluation on anyone considered to be a danger to themselves or others.” Danger to self or others has long been the standard for involuntary commitment, but until recently, it has seldom been used on young children, especially without immediately notifying their parents.

“The number of children involuntarily transported to a mental health center in Florida has more than doubled in the last 15 years, to about 36,000,” according to a 2019 report by the Baker Act Reporting Center. In another such incident, a “12-year-old boy with autism was taken to a facility in a police cruiser. It was the boy’s first day in middle school and during a meltdown, he scratched himself and then made a suicidal reference,” according to CBS. The boy’s mother says that the school had a plan to follow if the boy made threats, but the plan was ignored.

It’s certainly true that six-year-olds have threatened suicide and some, unfortunately, have completed the act. And 12-year-old boys definitely have the potential to harm themselves and others. But for schools – with the help of law enforcement personnel and mental health professionals – to “Baker Act” children is an extreme interpretation of the law. “The law specifies that minors can only be held for 12 hours before [a mental health] examination is initiated. For minors, notification must be provided as soon as the child arrives at the facility,” according to the Family Center for Recovery. The law does not say that parents must be notified when the child is taken away from the school.

The Family Center adds, “The statute specifically calls for ‘substantial’ evidence, which is [a] much higher bar than simple suspicion. As a result, people cannot be involuntarily institutionalized simply because they’re acting strangely, refuse to seek psychiatric examinations, or have occasional mood swings or outbursts.”

Need I point out that all children, not just special needs children, experience occasional mood swings or outbursts? School personnel are supposed to be trained to handle these situations.

But “zero tolerance” policies for “acting out” and threatening school property have led to such excesses and others, such as the use of in-school restraints and seclusion. Restraints and seclusion are now being called into question, especially since they have been used capriciously and brutally, especially on children with special needs. IEP plans that specify procedures to follow if a child has a meltdown, as with the 12-year-old, and in schools that supposedly have staff trained to handle special needs children, like the six-year-old, are too often not communicated to staff or simply ignored.

Of course, such treatment is the exception rather than the rule. Some states are beginning to enact laws regarding restraint and seclusion. And many well-trained special needs educators would never countenance such treatment of mentally ill or neurodivergent students. But 36,000 children is a lot. Two-day commitment away from parents is excessive for a six-year-old. Police officers taking children away in cruisers before notifying parents is unconscionable. The law specifies that minors can be held for only 12 hours before [a mental health] examination is initiated. For minors, notification must be provided as soon as the child arrives at the facility.

Florida state lawmaker Jennifer Webb has introduced a bill to reform the Baker Act. It includes training for school officials and resource officers and establishes rules on when a parent should be notified that their child might be committed.

“[The Baker Act] should only be used as a last resort,” she told CBS.

 

What Should Medical Students Learn About Mental Illness?

I recently saw a news story reporting that a single medical school, Des Moines (IA) University, has made it mandatory for medical students to learn how to care for patients with mental illness.

Funny. I would have thought that was already happening in medical schools across the country. Apparently not. Although medical schools teach prospective doctors to diagnose mental illness, the article notes, they do not require students to learn how to care for the mentally ill. When the class started in 2018, it was an elective, but it later became a requirement.

The curriculum includes having people in recovery from mental illness, loved ones of patients, and healthcare providers speak to the class. It is hoped that this will combat the stigma that arises from student doctors only seeing mental patients on locked wards when they are in severe crisis.

Of course, confinement on a locked ward is not typical for people with SMI. Many people with bipolar disorder and even schizophrenia, for example, require inpatient treatment only occasionally, spending the majority of their lives receiving treatment, medication, and therapy as outpatients. One wonders if the stigma surrounding mental patients extends to them as well. Do some GPs tend to ignore physical disorders while focusing on the mental ones? It’s fairly well known that doctors sometimes focus on a person’s weight as being the cause of all their symptoms instead of looking for (or testing for) other conditions. Might there be a similar narrowing of focus regarding mental patients?

Looking at the course, the answer may be yes. Interestingly, the main concern in developing the course seems to be that because doctors were so uncomfortable treating psychiatric patients that they focused on the SMI and never diagnosed and treated conditions such as heart disease, hypertension, and other medical problems. Professor Dr. Lisa Streyfeller cites what she calls “really horrifying statistics that folks with severe mental illnesses die on average 15 to 30 years earlier than people who don’t have those illnesses.”

As important as it is that people with SMI receive treatment for their psychiatric conditions, physicians need to be aware that such people have physical needs and illnesses as well. And as encouraging as it is that mental patients themselves, and their loved ones and caregivers, are included in the curriculum, the article made no mention of teaching prospective doctors how to interact with mental patients they encounter in their practices. If such courses do not exist in medical schools other than DMU, where are doctors going to learn how to talk with and understand the many, many patients they will have who suffer with anxiety, depression, mania, anorexia, and the dozens of other diagnoses?

In some communities, first responders such as police and EMS workers are beginning to have mental health practitioners go on “ride-alongs” to help educate emergency personnel on how to handle situations involving the mentally distressed. Classes like the one at DMU (if others existed) could benefit from having students “ride along,” doing internships or rotations with established doctors who treat the physical as well as the mental symptoms of their patients. Perhaps psychiatric rotations in medical schools could include student practice in community or campus mental health centers instead of just locked wards. Perhaps medical schools could involve students in role-plays involving speaking with and treating the mentally ill, the way they sometimes do for prospective doctors’ encounters with terminal patients.

With NAMI reporting that 1 in 5 U.S. adults – 20% – experience mental illness each year and that
1 in 25 U.S. adults – 4% – experience serious mental illness each year, the odds are overwhelming that future doctors will need to learn how to treat patients both physically and mentally, as well as simply on a human level.

Here’s hoping that the DMU model class idea spreads – and that medical school education on mental health someday will be covered more thoroughly than a single class and a visit to the locked ward.

 

Reference:

DMU Becomes First Medical School to Require Mental Health Course for Students

On Stigma Fighting and Political Advocacy

Lately, I’ve noticed a trend in mental health circles. It’s a question of philosophy on some levels. What should we, as people concerned about mental health, mental illness, and society, be doing with our time and energy?

The two choices boil down to fighting stigma and political advocacy. They each have their motivation and their adherents.

The stigma fighters (including the organization Stigma Fighters) maintain that the way to make things better for the mentally ill is to erase the stigma that surrounds mental illness (particularly serious mental illness, or SMI). And there’s no doubt that there is stigma. The mentally ill are feared and blamed for violence in society. They do not get jobs or lose jobs because of their conditions. They hesitate to enter treatment for fear that friends or family will find out.

While mental illness is no longer the “secret family shame” that led to family members being “put away quietly,” kept locked in the attic, and never mentioned, many families do still find that mental illness – in themselves or their loved ones – is something to hide. Something not to discuss in polite company. Something to ignore the existence of.

People who fight stigma usually do so with information and education. Celebrities – even the British royal family – speak openly about conditions such as bipolar disorder, depression, anxiety, eating disorders, OCD, and other of the more common diagnoses. You undoubtedly have heard the PSAs on television that explain that mental health is important and that seeking treatment is not something to be ashamed of.

Are the stigma fighters making a dent in the stigma? It’s hard to say. At least they seem to have opened a conversation about mental health, mental illness, treatments including medications, mental illness among men, suicide, and other problems we face.

Still, the political advocates say, all that stigma fighting has done nothing to increase the number of psychiatric beds available or the number of psychologists caring for rural populations, the homeless, or people with schizophrenia and other psychoses that are foreign to most people’s experience. What we need are people who will bring up these and other issues with legislators and influencers at the local, state, and national levels; who will present proposals that may do some good in increasing access and funding; and who will advocate for improvements such as training for first responders in how to address mental health concerns.

And it’s true. All these things – and more – are needed. We may debate the wisdom of involuntary commitment or compulsory medication, but they are certainly topics that need to be explored if a consensus is ever to be reached. Most people in the mental health community admit that the system is broken and needs to be fixed – or possibly re-thought from the ground up.

Where do I stand on this debate? I feel that one or the other is not enough. It’s not an either/or situation. It seems to me that unless there is some real progress made in fighting stigma, the voting public and the legislators will not understand the realities of mental illness, the need for change, and what needs to be done to fix the system. Unless we engage in spreading information and changing people’s minds about what being mentally ill means, support for policy changes will be thin on the ground. And unless we come up with some solutions that people understand and support, nothing will change.

Myself, I work mostly in the stigma fighting camp. I don’t have the political acumen, contacts, and energy that real activism takes. I know it is vitally important, but it is not something I can do very much or very well.

What I can do, through my blogs and my books, is help with the information and education, spreading the word about mental health and mental illness, and helping alleviate the stigma that accompanies them. I also intend to start looking for opportunities in my writing to comment on the larger societal issues and proposed solutions and help with education about them as well.

To solve the problems surrounding mental illness, we must all do what we can, and what we do best.

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