Bipolar 2 From Inside and Out

Posts tagged ‘mental illness’

Does It Matter What We Say?

Words matter. I preach that all the time. Language is what gives our thoughts reality and how we make essential connections. Ideas become more concrete when they have words attached to them. It’s hard – perhaps impossible – to convey a thought without language of some kind. And how we use words is dependent on how and what we think.

Words matter. Think about how the terms “rioters” and “protesters” reveal a person’s opinions about the motivations of the people in the “mob” or “crowd.”

Words matter. Our community has been pushing back against words such as “psycho” and “crazy” when it comes to referring to people who need psychiatric help. Many people are gradually realizing that such words are equivalent to slurs and are no longer acceptable. (Except in the aftermath of violence, of course. Then, those terms are tossed around indiscriminately.)

Words matter. But how do we in the community refer to ourselves? What words are advocates using? And how do we want the general public to refer to psychiatric problems?

I’ve written before about the terms “behavioral health” (bad) and “mental illness” (better). But what’s best? Increasingly, the words du jour are “brain illness” and “brain disease.” We’re watching linguistic change in action.

But linguistic change happens at a glacial pace. Words that were used in Elizabethan England are still used today. Think about all the words and phrases that Shakespeare invented that are still used today, and with the same meanings – unreal, lonely, and green-eyed (as in jealousy), for example.

Linguistic change, on the other hand, also happens blindingly fast. Slang, tech terms, and jargon in particular appear and disappear in the blink of an eye (as it were). Think about the terms that refer to female beauty. There were times when “phat,” “fresh,” and “fly” were all applied to women. (Yes, I’m dating myself. I don’t even know what the current term is, but I bet it’ll be gone next month. At least I know that “fire” has replaced “awesome,” “boss,” and “da bomb.”)

So, where are we in the (something) community now that we’ve left “behavioral health” behind? “Mental health” was the clear frontrunner for a time. Then it was “mental illness,” then “serious mental illness.” Now the term being put forward is “brain illness” – or even “brain disease.”

I’ve talked about the implications that various words have. What are the connotations of the new terminology? “Mental illness,” as opposed to “mental health,” drives home the point that “mental health” is a euphemism. It’s not health that’s the problem – it’s the opposite of health. “Brain illness,” as opposed to “mental illness” says that the problem is not in the mind, it’s in the brain.

I think that’s a tough concept for the general public to take in. To most, the mind and the brain are synonymous. Whether that’s accurate or not is hard to say. It’s true that the brain is the physical embodiment of thought, emotion, and cognition. These things can’t exist separate from the brain. They are so intertwined that it’s hard to think of one without the other – especially for laypeople.

But “mental illness” implies that the mind – the thinking – is what is disordered. “Brain illness,” on the other hand, says that the problems lie in the functioning – the physical structure – of the brain. In my opinion, it’ll be tough sledding to make the public understand the sometimes subtle difference between the two.

Recently I saw an online post that decried the fact that advocates and professionals aren’t yet using the terms “brain illness” and “brain disease.” And there’s some truth in that. My own therapist doesn’t. But practitioners are engaged in dealing with the general public as well as those in the community. There’s something to be said for addressing those people in language they understand better. There’s the possibility that when hearing “brain disease,” most people will think “brain tumor” rather than what we are really talking about. And there’s the problem with the slowness of linguistic change.

Words matter. But so does the speed of change. Of course, if we want to change the dialogue, we need to use more accurate terms to promote our message. But it’s probably too soon to expect everyone to be on board. I’m not saying that we should give up on the process of fostering change. I am saying that we shouldn’t be beating each other up for not yet having made that progress, even among ourselves. It’s a process, and not everyone progresses at the same rate.

Incremental change is better than none. Indeed, unless you’re talking about a fad, it’s the only way change happens. And we’re not talking about a fad here. We’re talking about a fundamentally new understanding of what it means to have schizophrenia, bipolar disorder, major depressive disorder, and other illnesses.

That’s going to take serious time.

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What Does PMHNP Mean?

What the initials mean is Psychiatric-Mental Health Nurse Practitioner (also known as Psychiatric Nurse Practioner or PNP). What that may mean for mental healthcare is the potential for more treatment and access to therapy. Increasingly, nurse practitioners are taking over some of the duties of psychiatrists and providing services to people who have mental disorders, or even serious mental illness (SMI).

What qualifications do nurse practitioners have? They must have a master’s or doctorate in nursing with a psychiatric nurse practitioner concentration, plus two years of work experience. Unlike psychiatrists, they aren’t MDs.

Psychiatric nurse practitioners perform many of the same functions that psychiatrists do. They work in hospitals, rehab facilities, outpatient mental health centers, and even in private practice in many states. (Other states require that they work under the supervision of a physician.) In addition to providing psychotherapy, PNPs can write prescriptions – including for controlled substances – regulated by state boards of nursing. They work with other professionals and with families to meet patients’ needs and create a holistic care plan that typically includes therapy, counseling, and medication.

There’s a crying need for PNPs. It’s no secret that it’s difficult to find psychiatrists and psychotherapists and that the waiting list is long for a new patient seeking treatment. Last year, 151 million Americans lived in mental health professional shortage areas, according to the U.S. Health Resources and Services Administration (HRSA). They reported that those areas need 7,584 mental health care practitioners to fill the gap.

It’s a good field to go into, too. Salaries are reported as ranging from $81,000 up to $140,000 per year. And in 2021, the unemployment rate was less than 1%. Currently, there are over 10,000 PNPs in the US, of which 80% are women. The U.S. Bureau of Labor Statistics (BLS) projects that the employment of all nurse practitioners will grow by 52% between 2020 and 2030! They anticipate 29,400 new job openings across the U.S. every year between 2020 and 2030. 

Minority Nurse magazine reported in 2020 on why there’s such a strong demand and positive job outlook for PNPs. They cited expanded insurance coverage for mental healthcare under the ACA, increased awareness of the importance of mental health, and the mental healthcare needs of veterans who served in Iraq and Afghanistan. The aging population of Americans may be another factor, as more and more people require services for disorders such as Alzheimer’s and dementia.

How good are PNPs? Psychiatric Times says that “patients report favorable experiences working with nurse practitioners.” Findings from one study determined that patients had “greater satisfaction with their care provided by nurse practitioners when compared with their MD colleagues….Investigators found that patient outcomes from nurse practitioners working independently or with MD collaboration had similar outcomes, when compared with the patients working with MDs alone.”

Although it seems that psychiatrists and PNPs ought to be natural allies, Psychiatric Times also notes that “national initiatives and some agencies have encouraged an us vs. them mentality, pitting psychiatrists against nurse practitioners and other advanced care providers.” That’s unfortunate for so many reasons.

I’ve never used the services of a psychiatric nurse practitioner, though there are several near me. If I had known about them when I was between psychiatrists, I certainly would have investigated the option. There’s something appealing about getting my therapy and my meds all from one person, a situation that hasn’t occurred since my previous psychiatrist retired. (I had to spend six months on a waiting list before I found another.)

For anyone in the same situation, I would suggest looking into it. I am convinced that PNPs have an important role to play in mental healthcare. If their presence reduces the problem of scarcity of mental health professionals, they should be welcomed, and awareness of their availability should be publicized. If more people knew about PMHNPs, it would expand the choices that mentally ill persons have. It would also benefit organizations, inpatient and outpatient facilities, and community-based care.

Is there a downside? I don’t see one.

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The School Shooter Problem and the Mental Healthcare System

It’s been reported lately that there is a mental health crisis among young people in the US. Depression and anxiety are on the rise. Some claim they know what causes it, and some don’t. The usual suspects include social media, bullying (especially bullying on social media), academic pressure, the COVID-19 pandemic, isolation, and uncertainty about the future. Fear of and reactions to school shootings are in the mix, too. The problem has garnered interest among the people who have the capacity to address, if not actually solve, the problems.

President Joe Biden announced in his 2023 State of the Union address that the Department of Education will divvy up $240 million in grants to help schools tackle the crisis. If you average that by 50 states, it comes to around $50 million per state. A more accurate estimation considers that, since there are 16,800 school districts in the US, that, on average, each district would get roughly $141,000 for youth mental health to be spread around all the schools in each district – not really very much. That money, plus the billion dollars invested last year, is earmarked for more mental health counselors and mental health professionals in the schools.

All that is well and wonderful, but what are the problems that lawmakers want those funds to solve? Apparently, many lawmakers and public policy boffins think that preventing school shooters should be the primary goal. Identifying the kids that are likely to resort to weapons to settle their differences with schoolmates and teachers seems to them to be the most effective use of the funds. The basic debate is whether those funds should be used to identify and treat potential school shooters or help the students who are traumatized by the incidents and by the looming threat of more – prevention of violence versus reaction to the threat itself. In general, Republicans want to address finding and preventing the shooters, while Democrats seem to prefer ministering to those affected by the shootings – and enacting gun control. (I’m not getting into the gun control debate right now.)

Democratic senator Chris Murphy raised the issue in the wake of the school shooting deaths in Uvalde, Texas. “Spare me the bullshit about mental illness,” Murphy said. “We don’t have any more mental illness than any other country in the world. You cannot explain this through a prism of mental illness because we’re not an outlier on mental illness.” Biden also played up the necessity of dealing with the repercussions of the school shootings: “Address the mental health crisis deepening the trauma of gun violence and as a consequence of that violence.”

When it comes to getting shooters into treatment, though, there are problems. Differences in opinion are rampant on whether psychological treatment can prevent school shootings. Partly, it’s a problem of anosognosia. The potential and actual school shooters do not think they have a problem – and the same can be said for many of their parents – so they’re not very likely to make it into the mental healthcare system or gain any benefit from it if they do.

Another reason is that CBT, the currently favored treatment option, really doesn’t have anything that would address the incipient violence of students who are so troubled that they think it would solve their problems of anger, isolation, revenge, desire for fame, bullying, or whatever other factors may be implicated. It’s also worth noting that many, many students are bullied, mocked, ostracized, or otherwise demeaned. The vast majority of them do not go on to become school shooters, or the problem would be worse than it already is. (Personally, I was subject to some extreme bullying in school – and had access to guns and no access to mental healthcare at the time. I never shot anyone or ever thought about it.)

Perhaps the best that can be expected of mental healthcare right now is ministering to the bereaved and the traumatized. Until or unless we come up with some way of more reliably identifying and treating potential shooters before they become actual shooters – something that has yet to be accomplished – we’ll be more adept at cleaning up the aftermath.

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Live for Today

I see a lot of memes exhorting us to “live for today.” Sometimes these are in the context of life being uncertain and needing to live each day as if we’re going to die tomorrow. And it’s true that the future isn’t guaranteed to any of us.

This has evolved into the “YOLO” (or “You Only Live Once”) philosophy. It’s not clear what YOLO really means. To some, it’s a challenge and defiance – the idea that you should try something even if it’s dangerous because you may never again get the opportunity to do it. If you look at it this way, it’s the opposite of the previous understanding of “live for today,” in that one can actually hasten the absence of tomorrows based on what potentially terminally stupid thing one decides to try or is goaded or shamed into trying. I followed this philosophy one time when I decided to go for a ride on a zipline. Stepping off the platform frightened me, but I did it. Now I’m too old and decrepit to do it again, so I’m glad I did it then.

On the other hand, “You only live once” could also mean that you should take care of yourself. You only live once, after all, so why not live as long as possible? Nutrition; sleep; exercise; avoiding drugs, smoking, alcohol, and unhealthy foods; and relaxation techniques are all considered factors that will lead to long life – as long as you don’t consider factors such as genetic disorders, cancer, and tragic accidents you can’t control.

If those behaviors sound an awful lot like self-care, well, they are. And for those of us with brain disorders, self-care is perhaps the most often recommended thing we can do to keep ourselves functioning as well as possible. Of course, if I were a cynic, I would say that self-care might be recommended so often because it’s an easy thing for businesses and insurance companies to recommend rather than actually helpful, but more extensive or expensive, interventions.

Living with a brain disorder is in many ways a day-by-day challenge. Every day, we must do the things that will lead to stability (we hope), including taking our meds if they’re prescribed, going to therapy, building a support system, and performing self-care. It’s true that we only live once, but that once proves to have its own unique challenges.

At times, it feels like we have been cheated by life by having our once around be so difficult. And I’m not going to say that isn’t true. I don’t think that having a brain illness makes us more sensitive or understanding or creative – except that we may be more sensitive to the needs of others who also have brain disorders. Mostly, it just makes life more – challenging is about the best spin I can put on it. And everyone in this life has their own challenges. There’s no use comparing whose life is worse.

Still, it’s a worthy goal to try to live the best life we possibly can within the limitations that our disorders impose on us. The fact that we only live once – and that our lifespan may be reduced by our illnesses – makes it all the more important that we make the most of what we are given.

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Can I Choose My Emotional Reactions?

Back before he started on his path to learning how to live with me, my husband used to refuse to say he was sorry if he hurt my feelings. “I didn’t mean to,” he would say.

“If you stepped on my toe without meaning to, you’d say you were sorry,” I replied.

“Yes, but if I stepped on your toe, I’d know I hurt you.”

“I tell you that you hurt my feelings. That’s how you know you did.”

“I can’t control your reactions. I say something and you react with hurt.”

“I can’t choose my reactions when you step on my toe. It hurts and I say ouch. It’s the same when you hurt my feelings.”

We’d go around like this for a while.

Later, he came around to the idea that I couldn’t control my reactions. There were things that he couldn’t see inside me, from my emotional triggers to my bipolar disorder. At last, he admitted that I couldn’t control my reactions and learned to apologize even for things he didn’t mean to do.

Later still, he claimed that maybe I couldn’t control my emotional reactions, but that I had control over what I did about them. I maintained that I couldn’t necessarily do that. My feelings were hurt and I cried. I could choose whether or not to leave the room or stop speaking to him, but the tears were not optional. They were not something I could choose or control. Believe me, I’ve tried.

Our admittedly small example has larger implications. There seems to be a lot of things we’re supposed to be able to control. In the illustration above, your mind, your relationships, your emotions, your actions, and your words are said to be things you can control.

I would disagree with some of that. As my experience with my husband showed, I couldn’t control my emotions – I didn’t choose them. I can’t control my relationships. There’s another person involved, with a lack of control over their emotions as well.

And my mind. When you live with serious mental illness (SMI), you’re acutely aware that, a lot of the time, you can’t control your mind. From overthinking at one end of the continuum to psychosis at the other, the mentally ill mind does what it will. Personal choice can’t control it. We’re not able to reach inside and change our brain chemicals or the past traumas that influence our minds and our choices. Sometimes medication and therapy can’t control the mind either.

There are also a lot of memes – and people’s opinions and statements – saying that we can control whether we are happy or not. “Choose happiness.” “The only difference between a good day and a bad day is your attitude.”

I’m not even sure that’s true for people who don’t have SMI. Emotions aren’t something that can easily be switched on and switched off. Before I was correctly diagnosed and properly treated, I simply had to go through a spell of depression and wait for it to pass. It’s still largely true for me, except that now I know that the depression will pass, and a lot sooner than it used to.

I don’t think that it’s a good idea to deny your emotions, either. If you feel hurt or sad, let yourself feel that feeling and work through it. It may be trying to tell you something – that you’re angry for a reason, for example, and need to address that reason. Or if you’re sad, recognize that there’s something making you sad and stay with that sadness for a while. Forcing yourself to behave cheerfully denies the reality of your emotions and merely puts a mask on them. And that’s not healthy. Sooner or later, those feelings will leak out from behind the mask or shatter it.

I’ve always been a great believer in choice. But there are things I don’t think a person can or should have to choose. Emotions and our reactions to them are not within our control. Our actions are – leave an abusive relationship, seek help for mental illness, take medication every day, and so much more.

But not everything about us is subject to choice, and I think it’s better to recognize that than to deny it.

(And for those of you who are curious about it, my husband and I have chosen to work on our individual and mutual problems and have accomplished 40 years of struggle and working together to control what we can accept and what we can’t. We choose that struggle and that work every day.)

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Adjusting the Dosage

I go to a psychiatrist four times a year for med checks and a psychotherapist every month to six weeks or so for my ongoing mental health care. When I think a change in medication dosage might help, I always ask my therapist if she thinks I need to consult the psychiatrist and ask the psychiatrist if he thinks my medication should be adjusted.

Recently, I noticed that I had been in a hypomanic phase for a period of several months, something that doesn’t usually happen to me. At first, I thought it was the winter holiday shopping season that was the cause of my overspending. But as January rolled through and I was still running up the credit cards with online purchases, I had to admit that I was definitely in the clutches of full-blown hypomania.

I discussed this with my therapist, who approved my plan of telling my psychiatrist about it and asking if adjusting my medication was appropriate.

So I did. While we were discussing the problem, I asked whether upping my anti-anxiety med might help.

After considering it, Dr. G. said he didn’t think that would help, but that increasing the dosage of my atypical antipsychotic might. He wrote me a new prescription and instructed me to call him right away if it had unexpected side effects.

In one of the Facebook mental health groups I belong to, another member said that he thought titration (trying to find the right dosage by adding and subtracting) led to overmedication. That hasn’t been my experience.

My first experience with psychotropics was with Prozac, back in the day when that was the new wonder drug. It worked great for me – until it didn’t anymore. (This was, no doubt, partly due to the fact that it treated only my depression but not the other symptoms of bipolar disorder.) After that, a succession of drugs came along, until I started going to Dr. R.

My second psychiatrist, Dr. R., titrated my medication for literally years before we found a level and a combination that worked for me. He would start me on a new medication and then slowly and carefully increase the dosage until either it helped or didn’t help, or the side effects became intolerable. Then he would titrate the medication downward, again gradually, to prevent withdrawal symptoms. This made the process long and slow, but ultimately safer. Eventually, we found a “cocktail” that worked for me.

If titration means only upping the dosage of a medication rather than adjusting it both up and down or discontinuing it entirely, then I admit that the process can lead to overmedication. But I think that’s bad psychiatric practice. (The group member commented that I had had a good psychiatrist once I explained his process.)

My current psychiatrist has adjusted my dosages several times in conjunction with my changing needs. Over the years, my sleep aid has been entirely discontinued and my anti-anxiety med reduced from twice a day to as needed. The most recent change has been only a slight bump in dosage, carefully monitored, with a promise of attention in between my regular sessions if I experience problems.

That’s my idea of a good relationship between practitioner and patient and a sensible approach to changing medication. I do admit that it has been luck that put me in touch with psychiatrists who had the wisdom and regard for safety to change my meds only when necessary and only gradually. Now that I know what to look for, I feel better about changing psychiatrists should Dr. G. retire (which is why I needed a change after Dr. R.).

Will the change in my current meds help in curbing my hypomania? That’s still up in the air. It may be that the hypomania will subside on its own and the meds will have nothing to do with it. Or it may be that the higher dosage will prove ineffective and I’ll have to ask Dr. G. if starting a higher dosage or a different medication would be sensible. Either way, I have learned to trust the process.

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Green Flags, for a Change

I recently saw a meme that pointed out the red flags in a relationship, such as getting rid of friends and family; financial control; insisting on knowing whereabouts; gaslighting; intermittent reinforcement; and, of course, physical, sexual, verbal, or emotional abuse.

But the meme went on to say that, just as there are red flags of a bad relationship – one you shouldn’t get into or should get out of – there are green flags that indicate when a relationship is healthy and positive.

I’ve had relationships of both kinds and, although I didn’t recognize them at the time, have learned the hard way to notice and avoid the red flags. But I’ve also learned how to recognize the green flags.

It’s only fair to say that recognizing both red flags and green flags is more difficult when you live with SMI. It clouds your perceptions. It makes it harder to recognize when and why you should get out of a bad relationship and when a new one is a safe space to be in. We doubt ourselves so much that our vision gets clouded.

So, what do I see as the green “go ahead” flags in a relationship? Besides the absence of all the red flags, I mean.

Listening to you is the first one and maybe the most important. Along with that comes validating your perception of reality. It’s a hard thing to find, especially if you and your new partner have disagreements – which all couples do. You can disagree with someone without tearing them down, even if you have an emotional reaction to whatever you’re disagreeing about. It can actually be easier to agree on religion and politics than it is when the topic pushes one of your buttons. Realizing that you disagree but respect and love the person anyway is a hard thing to do and a harder one to say, but it’s important.

It’s also very important to act on what you say and to make your words and actions congruent. This is the very basis of integrity and trust. We’ve all met someone who says one thing and does another. It’s beyond disappointing. In fact, it’s one of the biggest red flags there is. Not being able to rely on your partner to do what they say they’ll do is a breach of trust. To cite one example (not completely at random), there’s the person who says that an open relationship is the ideal but then demeans you when you act on it – the same way they have always done.

Laughter is vital in any relationship. In order to share jokes and laugh with a person, you must be able to relax with them. Trust is involved here, too. You have to be able to trust that the other person won’t use “humor” to attack you, especially in front of other people. Sarcasm directed at you sours the good feelings you may have had. But genuine laughter, whether at a joke, a silly song, or a funny movie, brings people together. If you have SMI, laughter may have been long absent from your life. Getting back the capacity to laugh is a revelation.

Another aspect of a relationship that can be pivotal is understanding each other’s “love language.” This idea comes from a book by Dr. Gary Chapman that was published in 1995, The Five Love Languages. The five languages – ways that people communicate their love – are words of affirmation, quality time, gifts, acts of service, and physical touch. Problems happen when one partner doesn’t speak the same language as the other; for example, when one gives the other literal gifts while the other yearns for time together or physical touch. Figuring out your partner’s love language and adjusting yours to match theirs can be difficult.

Most important, I think, is perseverance. I often say that we could describe ourselves as “The Couple Too Stubborn to Quit.” We’ve been married now for 40 years. We’ve had bad times when we went to couples counseling – more than once. We’ve even tried to work out if each of us could make it if we separated.

So, those are my “green flags” for a relationship: listening, trust, laughter, understanding, and sticking with it. There may be more, and I’d love to hear from you what others you’ve found.

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What’s Good About Drug Commercials?

I’ve often bitched about TV (and, I assume, magazine) ads for psychotropics. I’ve said that I despise the fact that they make the entire public their own experts on what they need and shills for “Big Pharma.” I’ve complained that they hamper doctors by encouraging consumers to “ask if drug X is right for you” and to accept no substitutes. I’ve also said that the ads present unrealistic pictures of very serious mental conditions by making depression, for example, no worse than the flu or a hangover.

Nonetheless, I’ve decided that drug commercials do have some beneficial purposes and effects. They aren’t all evil after all. They send messages to the viewing public that are actually positive. These messages contradict the prevailing public conception that people with mental illnesses are different from other people – that the entirety of their lives is taken over by their illness. People with bipolar disorder change from the depths of despair to uncontrollable, laughing lunacy within the span of hours or even minutes. People with OCD are picture-straighteners and tile-counters. People with schizophrenia are violent criminals or raving crazies, often hospitalized for life. None of these brain illnesses can be treated, according to the general wisdom.

Modern drugs have improved people’s lives and improved the general public’s conception of what mental illness is like.

First, more of the commercials now present understandable views of what some mental illnesses are like. They do this primarily when they use analogies or metaphors. Bipolar mania is like climbing a house of cards that is destined to collapse inevitably at some point. Depression is like darkness, and medications can lessen it by bringing light. They even make the symptoms and side effects more understandable: tardive dyskinesia, for example, is depicted with actual twitches, intractable movements, and mobility issues.

Also, the ads do emphasize that there are treatments, if not actual cures, for disorders that the general public views in a stereotypical way. Take schizophrenia, for example. Most people associate schizophrenia with homelessness, psychosis, and/or raving unintelligibly. Yes, those are sometimes the consequences of the disorder, but they’re far from the whole story. I’ve seen commercials for schizophrenia medications that show a man with a family playing guitar, two women with schizophrenia calmly discussing their symptoms, and a comparison of daily pills and twice-yearly injections for treatment. They humanize an illness that too many view as intractable and untreatable.

I stand by most of my criticism of ads for psych meds. They are shallow and simplistic. They do promote self-diagnosing and self-prescription and demands on doctors. They minimize the good that talk therapy can do, concentrating instead on medical and pharmaceutical interventions. At the same time, though, these ads promote more accurate, healthier views of mental illnesses, even the most severe. They portray people who have the illnesses as having alternatives, socially productive lives, and “normal” interactions with others despite their psychiatric conditions.

I have no scientific evidence to support this theory, but my guess is that after viewing these ads, often several times a day, a poll would reveal changes in attitude. That, combined with the public service announcements about depression and even ads for telemedicine therapy sessions, may indeed make it more likely that people who live with these conditions without realizing it to better understand their own possible mental problems and those of their friends and family, and to have greater empathy toward them.

And those are good things. May the trend continue.

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The Three Kinds of Care

December is National Family Caregivers Month, so it seemed like a good time to talk about caregiving. In my view, there are three kinds of caregiving: giving care, receiving care and self-care.

Caregiving

Caregiving is not an easy task, no matter whether you’re a family member or a professional. With an uncommunicative person such as one with depression, it practically takes telepathy. At times it seems impossible to know what kind of care is needed. A hug? Encouragement? Alone time? Help with chores? A listening ear? My husband, who is my principal caregiver, does all those things for me.

One thing about caregiving that I learned from my parents is that caregivers need recognition, too. My mother took care of my father all through the years of the illness that killed him. He wasn’t mentally ill, but his physical needs were many. Once my mother came to me and asked if she was doing a good job of caring for him. Of course, I reassured her. The thing is, objectively she knew that she was meeting his needs well. She just needed to hear it from someone else. You can talk about not looking for external validation, but sometimes it’s the kind you really need.

Receiving Care

All caregivers need recognition, and the best kind comes from the person for whom they care. That’s not always possible. Many therapists find it inappropriate to get gifts from their clients (mine accepted a small plant graciously). But a simple holiday card can be a nice remembrance. Other recipients of care have something to offer their caregivers as well – simple human connection.

Certainly, those of us receiving care can be irritable or even angry about needing care, but some recognition from us can go a long way toward keeping our caregivers, well, caring. Kindness is reciprocal. I know it’s hard to remember that or to act on it.

I owe my husband – my primary caregiver – more than I can say. Without him, I wouldn’t be able to do what I can do – take care of paying the bills and work enough to keep us mostly current, for example. And I thank him, appreciate him, and do what I can for him. I try not to be greedy with his time and efforts – I know he has other things he’d rather be doing or needs to do for his own care. I know I don’t do nearly as much for him as he deserves.

Self Care

For people who have a mental illness, self-care can be difficult. We know what we should be doing, but it’s often difficult. It feels like self-care is just another chore, on top of all the other things we’re not able to do. If I can’t keep on top of laundry and dishes, how am I supposed to keep on top of showering? If I can’t manage to get out of bed for more than a couple of hours a day, how am I supposed to find time and motivation to exercise?

I know that self-care is important, but I have trouble doing it sometimes. I know I’m capable of it. I’m on my own while my husband is at work, and I managed to keep up self-care while he was out of town earlier this year. But somehow, I never seem to get beyond the very basics of self-care – eating and sleeping regularly. Never mind the manicures, shopping sprees, and bubble baths that some recommend. Those might require getting dressed, going out among people, and spending money. (Bubble baths don’t, of course, unless you count going out to get the bubble bath, which I do count. I sure don’t have any on hand.)

If you’re able to make even modest efforts toward self-care, make sure you give yourself a metaphorical pat on the back. Believe me, you’ve earned it.

The bottom line is this: No matter whether you give or receive care or care for yourself, you need and deserve recognition and appreciation.

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mental health

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When You Don’t Realize You’re Mentally Ill

You’ve heard the stories: A homeless man who has been diagnosed as schizophrenic panhandles for change, though few people stop because of his bizarre behavior. He refuses help from a governmental or charitable organization. His family finds him, but he won’t let them do anything to help.

Or this one: A bipolar woman has manic psychosis. She is convinced that her coworkers and people on the street are reading her mind and planting thoughts in her head. She refuses to take her medications because she thinks she doesn’t need them.

Or, perhaps worst of all, this one: A teenager who has been struggling with undiagnosed schizophrenia is convinced his mother is trying to kill him. He threatens her with a knife. The police are called and they shoot the boy.

Extreme stories? Yes. But these tragedies occur nearly every day. Most of them don’t make headlines, but they still cause suffering and even death for countless individuals and families across the US and around the world.

What these three people – and many others – are suffering from is “anosognosia.” It literally means “lack of insight,” but anosognosia is much more than that. It means that a person has so little insight that they don’t even realize that they are mentally ill. They don’t know that their behavior and thoughts are part of an illness.

Anosognosia is not the same thing as denial. Denial is when someone avoids something that is unpleasant or distressing to them. They do realize that there is something wrong – they just don’t want to deal with it. A person with anosognosia doesn’t even realize that there is anything wrong at all. They don’t realize they are mentally ill. Their brains don’t let them see that their thoughts and perceptions are not in line with reality. They don’t realize that their functioning is impaired. They think that they are perfectly normal. If anything, they think that the people around them are clueless and deluded.

Anosognosia is the number one reason that people with schizophrenia or bipolar disorder do not seek treatment or take their necessary medications. By some estimates, it occurs in up to 98% of people with schizophrenia and 40% of people with bipolar disorder. It’s also common in people with Alzheimer’s or dementia. People with anosognosia don’t get the help they need. Their condition doesn’t improve – in fact, it worsens.

So, what’s to be done? One solution may be a program that California Governor Gavin Newsom recently signed into law. It establishes CARE Courts – Community Assistance, Recovery, and Empowerment courts that make it easier for family members, first responders, outreach workers, and others to institute civil proceedings that make it possible to obtain up to two years of mental health services. The person being judged by the court will have access to a clinical team, lawyer, and “volunteer supporter.” Up to 12,000 of the most vulnerable people in California are expected to be helped by the CARE courts.

The program is controversial, however. Critics have said that the plan amounts essentially to forced treatment. Civil rights and disability groups are not in favor, though the program has been described as “voluntary.” In theory, a person would still be able to refuse treatment. And if the person has anosognosia, that might well be the case. The CARE courts plan is similar to another potential solution recommended by some clinicians – Assisted Outpatient Treatment (AOT). It’s not clear where the state would find people qualified and willing to monitor patients’ treatment and medication compliance. In Santa Clara County, AOT treatment consists of “intensive individual and group clinical services, peer support, intensive case management, housing assistance, 24/7 clinical crisis support, and medical evaluation.”

One of the most frustrating things about trying to get help for someone with anosognosia is the lack of appropriate treatment facilities, mental health workers, and other services. With many of the sickest patients being held in overcrowded emergency rooms or held for only 72 hours in a hospital ward, the situation is extremely complicated and not easy to solve. But if AOT or CARE courts keep mentally ill people out of jails and prisons, which typically provide either inadequate or no psychiatric treatment, that’s a good thing.

Most people with psychiatric disorders may hear about anosognosia and think, “Oh, that could never happen to me.” But the reality is that a person with anosognosia doesn’t realize when it is happening to them. It’s not an easy problem to solve, but educating people about anosognosia and developing plans for dealing with it are vital. It’s the most vulnerable members of society – and their families and friends – who are most affected by it. They need our help, even if they don’t realize it – or particularly when they don’t realize it.

This post first appeared on The Mighty.

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