My Experience Only. YMMV.

Posts tagged ‘mutual support’

Mental Illness: Poverty and Privilege

Mental illness is not just an American problem. In fact, it’s a problem around the world, and perhaps much more acute in other nations, especially those plagued by poverty.

There’s no way to know for sure, but many – perhaps most – of the world’s mentally ill are undiagnosed, untreated, ignored. Because what do you do when you live where there’s no psychiatrist? No therapist. No medication. No help.

Your family may support you, shelter you, or shun you, depending on their financial and emotional resources and those of the community. But for many people, there is simply nothing.

Psychiatrist Vikram Patel, one of Time magazine’s 100 Most Influential People for 2015, is working to change that.

As a recent profile in Discover magazine put it, Patel and others like him have set out to prove “that mental illnesses, like bipolar disease, schizophrenia, and depression are medical issues, not character weaknesses. They take a major toll on the world’s health, and addressing them is a necessity, not a luxury.”

In 2003, Patel wrote a handbook, Where There Is No Psychiatrist: A Mental Health Care Manual, to be used by health workers and volunteers in poverty-stricken communities in Africa and Asia. A new edition, co-written with Charlotte Hanlon, is due out at the end of this month.

Patel, in his first job out of med school, in Harare, Zimbabwe, says he learned that there wasn’t even a word for “depression” in the local language, though it afflicted 25% of people at a local primary care clinic. There was little study of diagnosis and treatment in “underserved areas.”

Later epidemiologists learned to their surprise that mental illnesses were among the top ten causes of disability around the world – more than heart disease, cancer, malaria, and lung disease. Their report was not enough to spur investment in worldwide mental health.

Patel developed the model of lay counselors – local people who know the local culture – guiding people with depression, schizophrenia, and other illnesses through interventions including talk therapy and group counseling. By 2016, the World Health Organization (WHO) admitted that every dollar invested in psychological treatment in developing countries paid off fourfold in productivity because of the number of people able to return to work.

One objection voiced about Patel’s model is that the real problem is poverty, not depression or other mental illness. The argument goes that the misery of being poor, not a psychiatric illness, leads to symptoms and that Westerners are exporting their notions of mental health to the rest of the world, backed up by Big Pharma. Patel responds, “Telling people that they’re not depressed, they’re just poor, is saying you can only be depressed if you’re rich … I certainly think there’s been a transformation in the awareness of mental illnesses as genuine causes of human suffering for rich and poor alike.”

Of course the problem of underserved mentally ill people is not exclusive to impoverished nations. There are pockets in American society where the mentally ill live in the midst of privilege, but with the resources of the Third World – the homeless mentally ill, institutionalized elders, the incarcerated, the misdiagnosed, those in rural areas far from mental health resources, the underaged, the people whose families don’t understand, or don’t care, or can’t help, or won’t.

I don’t know whether Patel’s model of community self-help can work for those populations as well as they do internationally. This is not the self-help of the 1970s and 80s, when shelves in bookstores overflowed with volumes promising to cure anything from depression to toxic relationships. It would be shameful if the rich received one standard of care for mental health problems, while the poor had to make do with DIY solutions, or none.

But, really, isn’t that what we’ve got now?

 

Surviving College While Bipolar

I had two goes at college, and they were very different from each other, based on the state of my bipolar disorder at the time.

The first time I went to college, for my undergraduate degree, I was undiagnosed and unmedicated – except for self-medication. I was away from home for the first time – that was my first goal when choosing a college, being after a “geographical cure.” I ended up in the Ivy League, a scholarship student and a fish out of water. And profoundly depressed.

I did manage to hit the ground hiking, as the university sponsored backpacking trips led by juniors and seniors for entering students. We used to joke that it was meant to lose a few along the way, but really it was for orientation. Campfire chats about college life and the like.

On that hike through the Adirondacks, I met Caren, Roberta, and Cyndi, who instantly became my best friends and were my support system throughout the five years I spent there.

Yes, five, though only four of them were really at the university. After my first year, I took a year off. My depression had gotten so bad that I was given to sitting on the floor in the hallway, staring at a poster for hours at a time instead of sleeping. During my year away, I worked a dreary but educational job as an evening shift cashier at a restaurant. When I returned, I had a new major and the same old depression.

Oh, I did have fits of hypomania. I joined a sorority during one, though I deactivated later in a depressive downturn. And I went through the ups and downs exacerbated by several failed romances, including one total trainwreck.

The only help I got, aside from the support of my friends, was one brief therapy group at the campus mental health center and a brief stay at the university clinic, because of some suicidal ideation that my friends recognized.

Needless to say, I came out in no better mental shape than I went in, but I did manage to snag a B.A. degree. Now I feel that I missed a lot of opportunities along the way. It was just another occasion when I felt that my lack of mental health got in the way of what could have been a more productive time, as a well as a happier one. When I left college I was still almost as ill-prepared to function as when I went in.

By the next time I gave college a try, I was, if not mentally healthy, at least mentally healthier. And being back in the town I had been so eager to leave, I had a larger support system, now including a therapist, parents, close friends, and a husband. This time I had help.

I was still a mess, but less of one. With my depression lifting, I was able to teach introductory courses and manage my own course load. I remember my first semester teaching as a blaze of hypomania as I adored the subject and thought I was sweeping all the students along with my enthusiasm. Then one of the students gave me a bad review and I plunged again, never to recover that soaring sensation. I plodded through the next three semesters of teaching.

This time I came out with an M.A. and better job prospects. The day after I graduated I was working as a temporary editorial assistant, a job I kept for 17 years, moving up to editor along the way.

What did my experiences with college teach me (aside from modern poetry and how to swallow aspirin without water)?

  1. Making it through college is possible when you’re unmedicated and have minimal support, but I don’t recommend it.
  2.  Even with diagnosis, medication, and support, it’s still not easy. You know how hard it is to get out of bed and take a shower some days? Now think about going to a class on top of that, where your work will be critiqued. Taking a year off was one of the best things I ever did.
  3. Being bipolar isn’t your only identity, though it looms large in your life. I was also a student, a teacher, a friend, a daughter, a wife, a poet, a cashier, and so many other things. I may not have enjoyed them as I should, gotten as much from them as I could, but they were as much a part of me as bipolar was.

I can’t see myself at this point going back to college and getting a Ph.D. Which is not to say I’ve never considered it. But I like to think that, were I to try, this time I would have a better chance of getting through, sanity intact, with something more to show for it than a piece of paper to hang on the wall. This time, I tell myself, I wouldn’t let Bipolar Me take the experience away from Me.

Self-Care and Human Needs

Self-care is one of the hot topics these days in the world of bipolar disorder and the people who live with it. Self-care can be as basic as remembering to eat or as complicated as knowing and avoiding your triggers.

Back in 1943, psychologist Abraham Maslow created what he called a “hierarchy of needs” – a series of stages that human beings must go through on the way to the ultimate goal of “self-actualization.” With few changes, the concept, usually illustrated as a pyramid, has continued to influence the study of human motivation and developmental psychology.

So what does self-care have to do with the hierarchy of needs?

The most basic needs of human life form the base of the pyramid. These are called “physiological needs” and are essentially what a person needs to stay alive: air, water, food, shelter, sleep, clothing. Without meeting these needs, a person cannot move up to the next level of the hierarchy.

A large part of self-care is devoted to meeting these very basic, fundamental needs. Air is usually not a problem but shelter and clothing can be, for those bipolar persons who are homeless – and there are more than a few. Many of us are just one financial reverse – loss of income, insurance, options – from being homeless.

The most common advice for self-care is to pay attention to these base-level needs: Remember to eat. Stay hydrated. Get enough sleep. At times, it’s a real struggle just to meet these self-care needs. Add “get exercise” to the list and it can suddenly be overwhelming. People with bipolar or major depressive disorder often need help accomplishing them. That’s as high as we get on the pyramid.

The second step of the pyramid, which people need to work on after they’ve met the requirements of the first step is called “safety needs”: personal security, employment, resources, and health. Again, the needs on this step may seem insurmountable, and may – probably will – require help to achieve.

But they are self-care needs too. Current society may not view them as such, but that’s because they tend not to struggle with them, at least not on the level of a person with a mental disorder. Individuals can sometimes help meet these needs, but more often government, community, or charitable organizations provide necessary help. Talking about self-care at this second level may seem like pie-in-the-sky to those who have not yet conquered the first. But truly, taking care of these needs is a form of self-care, enabling one to maintain the gains represented by achieving those of the first level.

The third level of human needs – and self-care – is called “love and belonging”: friendship, intimacy, family, sense of connectedness. Again, this is not usually thought of as a part of self-care. But it certainly is. Many of us – I include myself – lose friends, become estranged from family, fail at intimate relationships. There are other places to look for ways to practice self-care on this level, however.

Therapy groups and self-help groups can lead you to people who share your problems and may be able to help you in achieving self-care. (My husband met one of his dearest friends, who provided support, listening, understanding, and companionship, at a self-help group meeting.) If in-person meetings are not possible, social media such as Facebook, Twitter, and WordPress provide opportunities to meet some social self-care needs through various groups and online communities.

The top two levels of the pyramid are not as easy to think of as self-care, and not as easy to tackle. Level four is esteem: respect, self-esteem, status, recognition, strength, freedom. And five is self-actualization: to become the most that one can be. Realistically, these are not strictly speaking things that can be accomplished through self-care. Even neurotypical people may never complete step four, and there is reason to think that few people ever reach self-actualization. These are goals to strive for, but not guarantees.

Wherever you may currently be on the pyramid, the important thing to remember is that self-care will help you reach the next step; that each follows the one before; and that your bipolar life will improve with every step you achieve.

 

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.

 

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.

 

 

 

 

Which Way Is Out?

What do you get when you take two people, three doctors, eleven prescriptions, two pharmacies and an insurance company?

No, wait – I’m not finished.

THEN add another person, two banks, a credit card company, a missing check and a disputed charge.

Mix in bipolar disorder, clinical depression, and several months of previous stress.

Anxiety DisorderWhat you get, first of all, is something that rhymes with buster-cluck, and then a dangerous situation: Two people under pressure, neither of whom can function well enough to find any solutions.

There is enormous inertia. You make a few calls, get a few responses. Fine, you think. That’s taken care of. Except days later, it isn’t. There are new overdraft notices, rapidly dwindling supplies of psychotropics, and occasional fits of tears.

So you take another swing at it. More phone calls. More revolving phone trees. More dropped calls. More suggestions that you really need to get someone else to call someone other else to resolve it and here’s a handy 1-800 number that takes you to a department that never heard of you, your problem, or the company you’re dealing with.

Yes, they all agree. It’s important that you don’t run out of your psychotropics. It would sure be nice if there were enough money in the account to pay the premium for the crappy insurance. It’s a mystery why no one has any record of the complaint you asked them to file.

Another day. Another no check. Another no drug delivery. By now we’re getting into mixed states: immobilizing depression and nail-biting, catastrophizing anxiety.

You look for possible work-arounds. Maybe the local pharmacy can sell you enough pills to tide you over. But, oopsie! Your bank balance just went from -$53 to -$82. And the insurance won’t pay for drugs at the local pharmacy any more – only through mail order. Which brings us back to D’oh!

This is not hypothetical. This is happening.

What do we do now?

Well, we split up the tasks. I work on the drugs and insurance end, while my husband works on the banking problem. We both hover over the mailbox, waiting for the check.

We take turns. Both of us having a meltdown at the same time is not pretty. I’ve seen it. Trust me on this.

We do all we can do and then stop. For the moment anyway. When the pitch of my voice starts rising to dog whistle range and I start sniffling and tearing up, I know I’m just moments away from becoming incoherent, which may demonstrate the need for the psychotropics, but is not actually any help in getting them.

We try to take care of ourselves. Dan can sleep (I can’t), so he does. He buys my comfort foods (fried rice, mashed potatoes). I decide that this may not be the best time to be reading a new, fast-paced zombie apocalypse thriller and switch to a familiar old standby character study with no crises worse than deciding when to have a child (not a small thing, but on the scale of introspection to pulse-pounding, pretty low).

There’s never a good time for these cosmic pile-ups to happen, but now is unusually bad. The last few months have brought assorted financial and medical troubles (the two being related, of course), plus the death of three elderly pets within a couple of weeks of each other. Dan is dealing with the fact that the house he grew up in is up for sale. I haven’t been getting as much work as usual. Soon, I will have to look into expanding my client base.

After I get the drugs. And after they start to work. Whenever that is.

Sorry I don’t have anything encouraging or amusing or informative to share this week. That’s just the way it is sometimes. And now is one of those times.

 

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