My Experience Only. YMMV.

Posts tagged ‘mental illness’

Caregivers Need Care Too

While there are professional caregivers, family members often provide care and support for those with bipolar disorder and other mental illnesses.

My husband of 35 years is my caregiver. He does a spectacular job – making sure I have my meds, taking me to my appointments, running the errands that I have no spoons to do, keeping the house quiet when I need to sleep, making sure I eat at least one nutritious meal a day.

It’s a lot. And there are things I can give him in return. Things he needs.

Appreciation. When my father was dying of cancer, my mother was his primary caregiver. One day she came to me, wanting me to tell her that she was doing a good job. She knew that she was. She just needed to hear it from someone else, someone who could tell her that her excellent care had been noticed and appreciated.

Appreciation – validation – is the thing that caregivers need most, to replenish themselves, to allow them to keep doing the things that are so vital for their charges. And it’s the easiest to give. When you’re in the depths of depression, it may be difficult to remember to say “thank you,” but it means a lot to your caregiver.

Now I’m mostly out of my depression (usually), and I say “thank you” a dozen times a day. And he always responds, “You’re welcome, friend.”

Alone time. Primary caregiving can be a full-time job. I know that one thing I need in the process of healing is alone time. Dan needs it too. He needs time off, even if that’s just time to retreat to his study and watch a movie or go outside and dig in the garden. I can always reach him if I really need him – for example, if I have a panic attack – via cell phone if nothing else. But, as the saying goes, you can’t pour from an empty vessel. That’s part of the reason that he’s able to give me so much of what I need.

Couples time. This doesn’t necessarily mean sex. It means time spent together, doing something other than dealing with mood swings and trauma. It’s a little gift we give each other. Sometimes I sit through a movie I don’t really care for, just to give him the gift of snuggling on the couch. He got me color-and-bake ceramic mugs that are great for creativity and distraction. One rainy afternoon we sat together and each colored one side of the mugs.

Life stuff. Dan does most of the chores and tasks of daily living, but I do what I’m able to. I earn money. I pay bills online and do most of the other computing, except what he does for leisure. I help with cooking to the extent I can – sous-chefing, finding recipes, breading or mixing or inventing dressings and sauces, making grocery lists. He can ask me for help too.

Sharing my spoons. When I do find myself with a few spare spoons – a little extra energy occasionally – I try not to be selfish with it. When I have spoons to spend, I like to shower and dress and go out for lunch. But the other day, I showered and dressed and went for a walk in the woods with Dan, something he’s been longing for. My spoons ran out pretty rapidly, but he appreciated that I made the effort and shared one of his delights. It was another gift that cost no money.

In other words, when you have a caregiver, don’t think it’s all one way. Your caregiver needs care too. Small or large, what you are able to give will be appreciated.

 

I Don’t Care If They Discover the Cause of Bipolar

Recently there have been several so-called “breakthroughs” in discovering the cause of bipolar disorder.

And I really don’t care.

Whatever they decide the cause is, I still have bipolar disorder. No matter if it’s toxoplasmosis, gut bacteria, or faulty synapses that are behind it, I still get to experience the lows and (sometimes) highs, the apathy and psychological pain, the weeping and despair, the irritability and touchiness, the anxiety and the gloom.

Knowing the cause will not alleviate my symptoms one bit.

I know that people believe that discovering the cause will bring us that much closer to a cure.

But will it really?

If the cause is genetic, how am I supposed to go back and change my genes? Or does anyone really believe that gene therapy will be available to the mentally ill when even hospital beds are denied them?

If the cause is viral, does that mean that a cure is right around the corner? We now know what virus causes AIDS – HIV was discovered in 1983 – but nearly 35 years later, a cure is still far away. Yes, there are treatments that improve health and extend life, but there are also treatments that alleviate some of the symptoms of bipolar disorder. Will any advances be orders of magnitude greater, or merely incremental? And how much money will be devoted to finding those treatments when Huntington’s disease, multiple sclerosis, and a host of other conditions are still without a cause, a cure, or sometimes even minimal treatments?

With most bipolar sufferers being treated (if at all) in community mental health centers, via EAPs, or through six-weeks-and-out insurance programs, what are the odds that any new breakthroughs and any new treatments that result will be available to the bipolar-on-the-street (or in the group home or even at home or at work)? Will someone really arrange MRIs or TMS or brain implants for the homeless?

With bipolar disorder once again considered a pre-existing condition and not given parity with physical ailments for insurance purposes, will any advances trickle down to us at all?

What do you want to bet that any breakthroughs regarding the causes of bipolar disorder will lead to more pharmaceutical research and yet another pill that costs more than the average person can pay or the average insurance will reimburse? And how long will that treatment take to get through the FDA pipeline to reach the people who need it?

Nor is knowing the cause of a disorder necessary to cure it. Isaac Semmelweis didn’t need to know the cause of childbed fever, a disease that killed thousands – perhaps millions – of new mothers. Germ theory wasn’t even developed until decades later by Lister and Pasteur. But Semmelweis knew that if only doctors washed their hands between conducting autopsies and putting their hands in pregnant women’s vaginas, the death rate would decrease.

So when I hear that there’s a new theory on the cause of bipolar disorder – and they seem to be coming with increasing frequency – I say, “Where’s the treatment? Where’s the cure? Who will be able to access it? Who will be able to afford it? When will it produce positive results for me and those like me?”

Get back to me when you’ve found something that will help. Until then, keep splicing your genes and culturing your bacteria and stimulating your synapses. I’m getting pretty good results with what you’ve already discovered. For now.

Don’t keep raising my hopes until you have something more than “mights” and “some days.”

 

 

Surprise!

Surprise parties are fun for everyone, right?

Wrong!

While many people enjoy the surprise element (probably the guests do more than the honoree), even neurotypical people can shy away from the practice. Coming home to a darkened house, only to be greeted by bright lights and loud noise, can be an alarming experience.

For a person with bipolar depression, autism spectrum disorder, PTSD, or other mental conditions, it can be a nightmare.

My husband once decided to throw me a small surprise party. We and another couple were cleaning up an old house while a few friends gathered back at home.

One of the people had actively discouraged Dan from having the party. Robert had experienced depression and Dissociative Identity Disorder (DID), and knew how difficult such an event would be for him. He also knew about my depression and some of the incidents associated with birthday parties in my mind.

For instance, when I was a young teen, my “best friend” and I were supervising a party of younger children. During the game of Pin-the-Tail-on-the-Donkey, while I was blindfolded, she kicked me in the ass. Literally. In front of all the kids.

It was the occasion of my first major meltdown. For years afterward, I would not even admit to having a birthday, much less let anyone celebrate it.

Robert had experienced similar traumas involving groups of children, humiliation, and abuse. He was not able to cope with surprise parties and thought I might freak out as well.

Fortunately, decades had gone by since my traumatic party experience. I had been diagnosed and properly medicated and counseled about my issues. Dan knew me well enough to realize that I could tolerate a small, low-key surprise party. And so I did.

Still, Robert was right to be concerned.

Common events at surprise parties are triggers for many people. My friend Joanie has panic attacks when there’s lightning. Would flash photography set her off? I don’t know, but I don’t want to be the one who finds out. If the party is held in a restaurant, a person who hates being singled out in a crowd of strangers may have problems. People hiding in one’s home could cause flashbacks of a home invasion. My startle reflex is hypersensitive and could easily be triggered by sudden, unexpected shouts of “Happy birthday!”

Even opening presents in front of others can be difficult if one is weak in social skills, appropriate facial expressions, or spontaneous conversation.

So how do you give a surprise party for someone with certain types of mental illness?

Don’t.

If you think you must, ask the person what kind of party he or she would prefer, and abide by those wishes. You can suggest a surprise party, with the time and place being the surprises, but again, abide by the person’s wishes.

Prepare a small, low-key surprise rather than a party. Give a present a day or two before the actual date. Pack a slice of cake in the person’s lunch. Or take the person out to lunch. (Warn the restaurant personnel not to march around singing and waving balloons, if you mention that it’s a birthday lunch at all.)

Do not have party games, unless they are non-threatening ones such as mad-libs or trivia. Forget ones involving physical contact like Twister or ones that involve sensory deprivation like Blind Man’s Bluff.

You may wish to avoid serving alcohol, especially if the honoree is on anti-anxiety medications. Booze-fueled parties tend to become loud and rowdy.

Make it short. Personally, spending an hour with a group of four or more, even if they are all my friends, is about all I can take. And then I want a lie-down afterward.

Personally, I could live my life happily without ever having another surprise party thrown for me (even though the one Dan threw would have to be called a success). Nor will I be upset if I never get invited to another surprise party. I’ll be too busy worrying what it might be doing to the honoree to enjoy myself.

 

Don’t Tell Me Not to Feel the Way I Feel

“Don’t be sad/angry/upset.”

“Calm down.”

“Smile. It’ll make you feel better.”

“Stop getting all revved up.”

Never in the history of ever has any communication of this sort had the desired effect on a person – especially one with bipolar disorder.

When you offer this sort of “advice,” what you are basically doing is telling the person not to feel the way they feel. Not only is this useless, it’s insulting.

It’s useless because ordering someone to feel a certain way simply won’t work. Saying, “Be cheerful” will not make it so. Emotions aren’t like flipping a switch on command. Even for neurotypical people, emotions are complex interactions of chemicals in the brain. While some people claim – or may perhaps be able to – shift their emotional state at will (from angry to merely annoyed or to neutral), it isn’t easy or natural. There’s a reason that you feel the way you do.

For the person with bipolar disorder, it’s even more difficult – if not impossible – to shift moods at a whim, especially someone else’s. Bipolar is a mood disorder. It affects moods and emotions in a nonstandard, often unpredictable way. Telling someone to alter their own brain chemistry merely by thinking about it is ludicrous.

Even if the bipolar person’s moods or feelings seem exaggerated or uncalled-for to you, that person is having an experience no different than when you feel elated or despairing or fearful. The emotions may even be more profound, less susceptible to alteration by force of will.

But telling bipolar people not to feel the way they feel is not just pointless, it is insulting. You are denying their perception of reality, invalidating their experience, dismissing their concerns, minimizing their problems, discounting their feelings. In effect, you are saying, “I don’t feel the same way, so your feelings are wrong. Change them to match mine.”

Imagine that you have written something – a report, a poem, whatever – and feel good about it. You’ve made your point and done it well. You’ve captured reality as you see it and communicated it in a way you think is clear and effective. Then someone comes along and reads it and says, “This is crap.” They have denied what you feel and believe. And even if they’re right, even if it is crap, they have profoundly insulted you. And, of course, they may be wrong.

Diagnosed bipolar people already know that their emotions do not run the same as other people’s. There’s no need to remind them of that. And bipolar people are generally doing what they can to alleviate their symptoms, be it through therapy, medication, mindfulness, meditation, or whatever works best for them. When you discount their feelings you are discounting them as persons. That can be anywhere from annoying to soul-damaging.

Adam Savage, of Mythbusters fame, sometimes wears a t-shirt that says, “I Reject Your Reality and Substitute My Own.” He is (I hope) talking about substituting a provable, scientific reality for a mythical, uninformed one.

But to go around substituting your own emotional reality for other people’s – and trying to make them agree with you – does a disservice to the people you think you are trying to help.

So, what would be better than saying, “Don’t feel ________”?

How about, “I know you feel _________ and I can see why.”

Or “I can tell you’re feeling _______. How can I help you?”

In other words, start by acknowledging that the other person’s feelings are real. Then ask what the person needs. This lets the person know that you understand his or her feelings and that you would like to help in the way that the person thinks best.

If you know other things that have worked in the past, you could suggest them (after validating the feelings, of course). Would you like me to run a hot bath? Do you need a hug? Do you just need time alone? Do you want to talk about it? Maybe later?

It occurs to me that this is not really news to a bipolar person. The ones who need to read it are the ones who are doing the invalidating, not the ones who feel invalidated.

So, if you know someone like that – a friend or loved one, feel free to copy this post and give or send it to them, if you think it will help. I know it helped me when I figured out what was going on and what my husband and I could do about it.

The Tools for Tackling Bipolar Disorder

When you’re facing bipolar disorder – which is, when you have it, nearly every day – there are some things you can do to lessen its hold on you. But in order to do so, you’ve got to have the right tools. Try to collect as many as possible for best effect.

Shall we take a look at what they are?

The Usual Suspects

  • medication – to tame your symptoms, level your moods, get your brain back in gear, and/or regulate your energy
  • psychiatrist – to prescribe your medications (a primary care physician may also do this)
  • psychotherapist – to discuss with you the issues you haven’t resolved, the problems you still have, and the things the medication can’t do

Self-Care 

The two most important tools you need for self-care are sleep and food. Without either, the body can’t function properly, and if the body doesn’t function, the brain is less likely to function properly either.

Ideally, the food should be nutritious and eaten regularly, but let’s face it, that doesn’t always happen. But you’ve got to give your body something to run on. If there are carrot sticks there, eat them; if there is mac-n-cheese, eat that. If there’s Raisin Bran, well, it’s easy to eat and requires no preparation. Try for at least one substantial meal per day – two is better, if you can manage it.

(Of course, this advice doesn’t count if you have an eating disorder. In that case, see your doctor or psychotherapist or support group.)

Support

Find support where you can – a friend who’s willing to listen, a support group online or in real life. Try for a combination of these and don’t rely on any one of them for too much. Maybe you have a friend you can phone once a week; a support group that meets every two weeks; and an online group or two of people who really understand, with links to helpful articles and blogs. Before you know it, you’ve got a support system, especially if you count your therapist (which I do) or have a supportive family (which I don’t).

Spoon Theory

If you don’t know what this is, see https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Basically, Spoon Theory is a way to measure how much energy you have on any given day – and an understandable metaphor for explaining your symptoms to others, and a shorthand for other people who are also up on the theory. It can also help alleviate the guilt of not being able to do all the things you are “supposed” to do in a day. It’s not an excuse, but an explanation.

Distraction

Let’s face it, it’s all too easy to dwell on your symptoms and how miserable you are. And if you’re at the bottom of the depressive well and your meds haven’t kicked in yet, there may be nothing you can do about it.

But maybe there is. Do you know a person who tells good jokes – or really bad ones? Do you have music you used to play but have forgotten about? Do you know of a TV show that features people whose lives are an even worse train wreck than yours? Do you have a go-to movie that never gets old no matter how many times you see it? (Mine is The Mikado. )

Creativity

If that distraction involves creativity, so much the better. Coloring books and pages for adults have been the trend for a while now. (Some of them are really for adults.) Jenny Lawson draws and also puts together tiny little Ferris wheels. I know someone who can make little sculptures out of drink stirrers or paper clips. The point is, you don’t have to paint masterpieces. Just keeping your brain and your hands occupied is a good idea.

Comfort

Soft warm, fluffy things and smooth, silky things are soothing. They just are. Cats and dogs come instantly to mind (they also provide distraction). But I also have a collection of teddy bears and other plushies that I sometimes cuddle with. These are “comfort objects,” which is an actual psychological Thing. (I wrote about them once: http://wp.me/p4e9wS-k9.) I even took a plush bunny with me when I went to have a sleep study.

Stubbornness

This may be the most important tool of all. Be stubborn. Take those meds, even if you hate them. Eat that egg, even if you don’t feel like it. Go to that appointment, even if will take all your spoons for the day. Call that friend, even if you don’t think a joke will help. Post on your support group, even if you feel you are alone.

We can’t let bipolar disorder beat us. Not when we’ve got so much to beat it back with.

Why Do I Write About Mental Illness?

I have bipolar disorder. But that by itself isn’t the answer. Here’s why I write about mental illness and mental health.

It’s what I do. I’m a writer. It’s what I would be, bipolar disorder or not. I’ve been writing since I was a kid, and writing and editing professionally for decades. But that isn’t the whole answer either.

It’s what I have to do. I have plenty of topics to write about besides mental illness. Over the years I have written poetry; a few children’s stories; and articles about martial arts, religion, cats, education and teachers, technology, architecture, and other subjects. In addition to this blog, I have another – janetcobur.wordpress.com – in which I write about whatever crosses my mind or my path – books, news, humor, and the things that made me name my blog Et Cetera, etc.

But this blog is the one that I have to write. It started as journaling but quickly – in a matter of weeks – became more.

It’s what I am. Mentally ill, that is. A life-long acquaintance with – or rather, experience of – a mental illness makes the subject one that goes to the bone. I can’t call up a memory from my childhood that doesn’t involve desperation, sobbing, and disaffection, or fragile, giggling glee at things no one else noticed or cared about. My college years were marred by distress, anxiety, and apathy. My adulthood has been marked by breakdowns, immobility, and psychotropics. I can’t get away from the subject, even if I try.

I have the skills for it. I have read a lot about mental illness and bipolar disorder, in self-help books, more scholarly works, memoirs, and even fiction (http://wp.me/p4e9Hv-nE). I have an academic background and an intelligent layperson’s knowledge of science and psychology. I can share that perspective with others.

It helps me and others understand. Examining aspects of bipolar disorder necessitates that I learn more about it – and therefore about myself. Planning, writing, and editing posts help me clarify my thinking about this illness I live with every day. Sometimes I am just too close to it until I step back and look at it from a different or even new perspective. That’s one of the benefits for me.

The feedback I get – comments from readers and other bloggers – leads me to believe that what I write has value for them too.

It needs to be talked about. The general public – society at large – doesn’t understand mental illness. There are widespread jokes, misunderstandings, and inaccurate media portrayals. Above all, there is discrimination – in jobs, housing, medical treatment, the legal system, and more. There is more trash talked about mental illness and psychotropics every time there is a mass shooting incident or a domestic terrorist bombing.

One of the solutions to these problems is education. Most of the writing I’ve done in my life has been on (or near) the subject of education. I consider myself an advocate for education. And now I am an advocate for education about mental illness. That education should start in public and private school health or social sciences classes. It should continue in adulthood for those who never learned it in school.

Celebrities like Glenn Close and Richard Dreyfuss have big names and big audiences and a vital message to spread about mental illness. I don’t have the big name or the big audience, but I do what I can.

Because the people, including me, who live with bipolar disorder and other mental illnesses every day, need messages of hope and sympathy and experience and activism and explanation and thought and outrage and kindness.

And that’s why I write about mental illness.

 

 

 

 

Discrimination: Mental Illness and Disability

A while back I wrote a post called “Another Word for Stigma” (http://wp.me/p4e9Hv-oz), which was about the new-to-me term “sanism” and how it set up a dichotomy between the sane and the insane. While sanism may have been intended to reframe the discussion about mental health issues, I said, “We already know that stigma exists surrounding mental illness. We don’t really need the word ‘sanism’ to redefine it. Or to pit us against one another.”

When applied to mental illness, “ableism” is another word that subtly reinforces stigma. It implies that, unlike the neurotypical population, those of us with mental disorders are differently abled, mentally challenged, or – dare I say it – disabled.

Many of us – including me – have applied for disability and many – including me – have been turned down. Despite that, many of us live with varying levels of ability and disability, which are nearly impossible to see and therefore to prove.

When I applied for disability, I was in the depths of what would once have been called a nervous breakdown. I had mental deficits, emotional instability, trouble performing the skills of daily life, inability to hold a job – certainly at the level that I formerly had, or possibly not at all. My thoughts were disordered. My life was disordered. I got by only with the help of a caregiver – my husband. If that’s not at least partial disability, I don’t know what is.

By the time my claim was denied and my disability lawyer was prepping me for a hearing, however, I was, if not well, at least better. I had found part-time work that I could do at home, which provided as much income as disability would have. At his suggestion, I dropped my claim. Perhaps I shouldn’t have, because the lack of medical benefits has been a constant difficulty.

So, am I disabled? I would have to say, partly. I still cannot hold a full-time job – certainly not without accommodations – and my caregiver (still my husband) has to help me with many of the tasks of daily living.

The notion of requiring accommodations leads us to the subject of discrimination. Employers are required by federal law to provide “reasonable accommodations” to persons with disabilities, according to the Americans with Disabilities Act (ADA), for conditions including “a physical or mental impairment that substantially limits one or more major life activities,” and also to “a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.”

“Reasonable accommodations” are not defined for mental disabilities, but examples of accommodations for other conditions include modifying work schedules, as well as leave flexibility and unpaid leave. But just try telling a prospective employer (as you are entitled to do) that you will need flexible hours to accommodate appointments, panic attacks, or other phenomena; or asking someone you work for to give you unpaid leave for a hospitalization. I think you know the result as well as I do.

One problem is that these forms of discrimination – which is what they are – are damnably hard to prove, as onerous and unlikely as being classified disabled in the first place. Yet the protections against these forms of discrimination are defined by law. But how many of us have the wherewithal to challenge them, prove our cases, and get by while waiting for the results of a lawsuit?

Even the act of asking for an accommodation opens us to yet another instance of stigma, and the outcome depends on the individual knowledge and understanding of an employer, when it should follow the law. We approach employers and prospective employers hat in hand, asking for – but not expecting – to get the treatment that is legally, rightfully ours.

In these days of rampant discrimination against people of any number of races, religions, national or ethnic origins, sexual orientations, and disabling conditions, our voices may not be the first to be heard. But we, the neurodivergent, the mentally ill, the emotionally disabled, the psychiatric patients, and our caregivers and loved ones deserve to be free from the effects of ableism, discrimination, and stigma.

Let’s speak up, keep educating about our issues, and support each other in banishing stigma, ending discrimination, and putting ableists on notice that we will not shut up until our rights are acknowledged.

 

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