My Experience Only. YMMV.

I wrote a post once about the difficulties of the mentally ill in finding and keeping jobs, how little employers think about hiring them, and how a mental disorder must often be kept secret if employment is to continue. And all that despite legal protections that are unknown or ignored. I received a vitriolic response that “those people” shouldn’t be hired, much less be promoted above and be supervising other employees like the writer. I couldn’t answer it, for fear of my keyboard bursting into flames.

There is no doubt that there is a stigma surrounding mental illness. People with mental disorders are blamed whenever gun violence occurs, even though the mentally ill are more likely to be victims than perpetrators. We are often considered to be violent, disruptive, and incurable – when we’re not ignored completely, especially in health care planning and treatment options.

The stigma even adheres to people around us. Mental disorders are still often linked in the media (particularly true crime books) to dominating or cold mothers, ineffectual or authoritarian fathers, and incest or abuse from any family members. While many mental illnesses have at least a genetic component, blaming the parents or family is an easy explanation that doesn’t hold water. Family or other kinds of trauma may cause psychological problems, but they don’t cause disorders such as schizophrenia and bipolar.

These falsehoods have wide circulation and many – perhaps most – people believe them. They are perpetuated by the media and by lack of knowledge about the realities of mental illness.

Part of the problem is how people find out about mental illness. Largely, mental illness is an “invisible illness.” Most people know little about it until it touches them or their family in some way. Even then, misinformation and prejudices against the mentally ill may impede or delay treatment and devastate families and other relationships.

Books, movies, and television are little help. The drama and horror of the “psycho killer” drive the plots of many kinds of “entertainment.” Even programs that try to present a more balanced view of mental illness do not have a great track record of getting it right, often perpetuating stereotypes even when they don’t intend to. Among these notions are that psychotherapy lasts forever, medications don’t work or create zombie-like affect, treatments are brutal, hospitalization is for psychotics and schizophrenics only, and the mentally ill are an occasion of comedy.

Then there’s suicide. The mixed messages about that are incredible. Suicide is cowardly. It’s easy. It’s noble. It’s a viable solution to problems. It is usually interrupted. The suicidal give no indications. Most suicides are successful. Bullying causes suicide. Teens, bankrupt businessmen (it’s almost always men), and people who have terminal illnesses are the most likely to die by suicide.

Yes, there are messages that promote understanding of mental illness and those who have mental disorders. Celebrities like Glenn Close and Carrie Fisher have used their star-power and their personal experiences to shine a spotlight on the subject. Unfortunately, 60-second PSAs aren’t the best vehicles for explaining complex and difficult problems that affect people in so many different ways. Autobiographies are better, but given how few Americans read these days (and the thrillers and romances they choose), how much of the message makes it out to the general populace?

Most of us with mental illness are talking primarily to each other. There’s nothing inherently wrong with that; in fact, it’s necessary to support one another and share information about our personal struggles and what has helped us survive and heal.

But more coordinated public information campaigns are needed. Think about Susan G, Komen and other organizations promoting awareness of breast cancer. Think how many Facebook messages you see about lost dogs or endangered wild horses. Think how schoolchildren are learning about protecting the environment and saving dolphins, whales, and pandas. Hell, people know about the Girl Scouts primarily through cookie sales and the Salvation Army primarily through Santa-clad bell ringers.

The truth is, stigma will continue until we educate the general populace about mental illness – until they understand that it’s an illness like many others, with treatments and hope available, and a need for research, and places to find help.

Unfortunately, those kinds of efforts require money, and organization, and leadership, three things that are sorely lacking in society as we know it.

Do I have the answers? No. But I’ll keep talking about mental illness and hope some people listen. And act.

The other day I was challenged to write about “a bipolar experience that was good/great and worth remembering.” I’ll give it a try.

Photobombed by a Lego dragon!

First, of course, there are good/great moments during spells of hypomania – a trip to DisneyWorld with friends (http://wp.me/p4e9Hv-2K) stands out in my mind. Despite my aversion to crowds and children, I found that I could have a good time at “The Happiest Place on Earth.” We swam, we dined, we rode, we visited, we watched fireworks, we laughed, we took pictures, we bought souvenirs. We avoided “It’s a Small World.” I won’t say I felt like a kid again, especially since my childhood was so eaten up by depression, but I enjoyed, romped, and was delighted on an adult level. With proper attention to self-care (food, rest), no anxiety attacks. We plan to go again, someday, maybe to the flower and garden exhibition.

Another time I had a significant insight was when my husband and I were cleaning out the garage. I found an old box of photos and other reminders of my college days. I started crying. I was thinking of all the bad experiences I had back then, from a rotten relationship, to time and opportunities wasted because of my disorder, to the year I took off when it all became too much.

My husband acknowledged that what I was saying was true, but added, “If you hadn’t been through that, you couldn’t have been as good a friend to Hal and Robbin and your other Prozac Pals.” It was the exactly right thing to say, and definitely worth remembering. It’s one of the reasons I started blogging – to use my sometimes calamitous experiences to understand and communicate with and maybe even help people in similar situations.

And blogging is a pleasure and an experience directly tied to my bipolar disorder. Writing every week about my illness and reading others’ comments have been a source of satisfaction, insight, and pride. I have another blog, but it provides nothing like the personal rewards of this one.

But most of all, bipolar disorder has caused me to realize that I married the right man. I’d say we have even grown closer in many ways because of my illness.

When we got married, I was undiagnosed, and my husband had some problems of his own. I was depressed, massively insure, with low self-esteem, and plenty of anxiety, just as you’d expect. There were plenty of times that we clashed and fought, just like any married couple. But we stayed together.

I had hideous depressions and devastating anxiety attacks. My husband held me, hugged me, asked if there was anything I needed, and if there was, made sure I got it.

Then came the big crash – a major depressive episode that flattened me, took away everything that was good in my life. Except Dan. He stayed with me.

When I couldn’t work, he paid the bills. When I couldn’t do housework, he cleaned and shopped and cooked. When I couldn’t bear to read, he didn’t complain about the mindless TV shows I watched. When I felt no sexual desire, he did without. He drove me to my psychiatrist appointments and picked up my meds at the pharmacy.

He still does a lot of that, even though I’m improving. Every day he proves he knows what it means to love someone “in sickness and in health.”

He’s not a saint. Sometimes he sits around in his underwear. He won’t use the GPS I got him for Christmas, even though he really needs it. He tells jokes that only an 11-year-old would find funny. He gets cranky when I won’t go somewhere with him.

But he cares for me, in both senses of the word. He demonstrates and teaches me patience, and tenderness, and understanding, which I try to give back to him. And I can’t think of anything better than that to have come from my bipolar disorder.

 

 

 

 

 

I was a bipolar child. I was a bipolar college student. I was a bipolar adult. And now that I am about to be able to get the senior discount card, I am a bipolar – what? – mature adult.

First, let me say that aging sucks. Except that the alternative sucks more. The problem is, I can’t always tell whether anything that happens to me is due to my bipolar disorder or due to aging. I fear that, since my bipolar is fairly well in check at the moment, what are left of my problems may be due to something else.

My hands shake, for example. This has been true for years, though. The neurologist called it “essential tremor,” which I think means it just happens and they don’t know why. But some medications have made the tremor worse, and one of the medications I’m taking now could be increasing the shaking. And the shaking gets worse when I have anxiety. So I think we can chalk that one up to bipolar disorder, mostly.

I forget words. Sometimes, when I’m talking, I forget the word that comes next and have to pause or talk around it until it comes back to me. Sometimes my husband fills in the blank, which is helpful, but really annoying. For a writer, losing words is scary, but the memory difficulties seem to happen more when I talk than when I write.

I know I’ve had memory lapses before that can be attributed to my medication, and those memories are gone forever. I’ve written about that phenomenon: http://wp.me/p4e9Hv-6k. But these seem to be single words that escape me, and that I can usually get back within a few seconds. It doesn’t feel like anything I’ve had associated with bipolar, so I suppose this one is aging. If it’s the onset of Alzheimer’s, I’m going to be so pissed.

I isolate. This I’m pretty sure is bipolar in nature, since I’ve been doing it for years, especially when I’m depressed. I’m also reasonably sure that I am getting less isolated as my bipolar disorder has eased. I still don’t get out much, though I did go to a fabulous (and large) party last Sunday. But I am active on Facebook and Messenger, and I write these blogs, and I talk on the phone.

On the other hand, I seldom leave the house, and that I think is an effect of aging. I have mobility and balance problems because of a bad back and some nerve damage in one foot. But bipolar is involved, since weight gain from medications also affects my mobility, and an aversion to crowds and noise is likely associated with my anxiety.

Side effects of bipolar disorder and bipolar medications are to be expected. So, for that matter, are side effects of aging. Teasing out which is which may seem futile, and perhaps it is. I just want to know which I have some degree of control over and whether some, especially the cognitive symptoms, are likely to fade, stay the same, or get worse.

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.

 

I Am Still Bipolar*

Last week I wrote a post that said I had stopped psychotherapy for bipolar disorder. But I am still bipolar. (And for those of you who object to that phrasing, see below.*)

Because my bipolar disorder is under some degree of control, it would be tempting to say that I no longer have it. That I am well, cured, normal, healed. That I am not bipolar.

But I still am.

I can work (at home) and earn a living, but I cannot go out and work in an office 40 hours a week. I can go out and run an errand occasionally, but one or two is about my limit. I spend most days on a fairly even keel, but I still cry for no reason sometimes or get myself in over my head when I think I can do more than I really can. I can travel 50 miles from home by myself, but I can no longer travel alone overseas as I once could.

I am still bipolar.

I always will be. Like a diabetic, I will always be affected by my condition. Like an alcoholic, I will always be recovering, but not recovered.

My symptoms will come and go. I will have good days and bad days. But I can never say, “I am cured.” Honestly, I don’t think I’ll even get to the point where I can say, “I am in remission.”

I am still bipolar.

I still have to watch for triggers and symptoms and pay attention to self-care and have someone to help me when I can’t. I still have to take my meds and I most likely will for the rest of my life. I still need to see my psychiatrist and have a psychotherapist’s number that I can call in case of emergency.

And that’s okay, sort of. I have learned to live with it, deal with it, cope with it, sometimes even ignore it.

But I am still bipolar.

 

*Grammar Note:

I understand the reasons that many people will not say “I am bipolar.” “You wouldn’t say ‘I am cancer,’ would you? I am not my disease,” they explain.

And that is true. You would not say “I am cancer” and you are not your disease.

But “I am bipolar” is still a perfectly accurate thing to say. Here’s why.

“Cancer” is a noun. You generally don’t use a noun in the “I am….” construction. It takes an adjective. You don’t say, “I am happiness (a noun),” you say, “I am happy (an adjective).”

The thing is, “bipolar” is an adjective (as in “bipolar symptoms”) as well as a noun.

There are plenty of words that work the same way. “Fat” is both a noun and an adjective. You can say “I am fat,” but usually don’t say “I have fat,” unless you specify, “I have fat around my waist.” That’s why “I have bipolar” sounds so weird to me. I’m used to “bipolar” being an adjective and perfectly acceptable in the construction “I am ______.”

So, I am not my disease. But I am still bipolar.

Nonetheless, I won’t try to make anyone else follow my rules. If you don’t want to say, “I am bipolar,” then don’t. I won’t object. But if I say I am, understand that I have reasons. Pedantic, academic reasons, but that’s where I come from.

Why I Stopped Therapy

I got my first hint that I might be ready to stop therapy when I realized how little I was going. Over the years I have scaled down from weekly sessions to biweekly.

Then I noticed that, effectively, I’d been going only once a month. I’d been forgetting appointments, showing up on the wrong day, oversleeping, or having too much freelance work to do.

Of course, those could have been signs that I was in denial, that I was resisting therapy, that we’d hit a bad patch of difficult issues and I just didn’t want to deal with them.

But I don’t think that’s what’s happened. Here’s why.

I’m stabilized on my medications and they’re effective. When my psychiatrist moved away, he left me with refills and a list of other psychiatrists. My PCP agreed to prescribe my psychotropics if I lined up another psychiatrist for emergencies. I did that, though I couldn’t get an appointment for months.

And that doesn’t alarm me. I don’t have the oh-my-god-what-if-my-brain-breaks-again panics. I don’t have the feeling that my brain is about to break again. I’ve thought about it, and I’m comfortable with letting my involvement with the psychiatric profession fade into the background of my life.

As long as I keep getting my meds.

I have more good days and I’m beginning to trust them. Oh, I still question whether I’m genuinely feeling good, happy, and productive or whether I’m merely riding the slight high of hypomania. But really? It doesn’t seem to matter very much. A little while ago I reflected on a string of particularly good days – when I accomplished things, enjoyed my hobbies, and generally felt content. And I simply allowed myself to bask in those feelings.

That’s not to say I don’t still have bad days. After a few days of hypomania, I hit the wall, look around for spoons and don’t find any, and require mega-naps to restore me. (I’m intensely grateful that I work at home and can do that. Most offices don’t appreciate finding an employee snoring underneath her desk. And my cat-filled bed is much more comfy-cozy.)

I still get low days too, but they are noticeably dysthymic rather than full-out, sobbing-for-no-reason, Pit-of-Despair-type lows that last seemingly forever. I know – really know, deep within me – that they will last a day or two at the most. And just that knowledge makes me feel a little bit better.

My creativity, concentration, and output are improving. I can work longer, read longer, write longer, take on new projects, think past today or even next week. I can trust my muse and my energy, if not immediately when I call on them, at least within a reasonable time.

I have trouble remembering how bad it used to be. I’ve made connections with several on-line support groups for bipolar and mental health. I find I’m astonished at the crises, the outpourings of misery, the questioning of every feeling and circumstance, the desperate drama of even the most mundane interactions. They are overwhelming. But I realized that it’s been a long time since they’ve overwhelmed me. I recognize that I could some day be in that place again – that’s the nature of this disease. But I have a good support system that I trust to help me not fall too far without a net.

I don’t have much to talk about when I go to therapy. There are issues I need to work on – getting older, getting out of the house more, reclaiming my sexuality. But most of those I feel competent to work out on my own.  My sessions are mostly an update on what’s going on in my life at the moment, plus a recap of my recurring problems. But those problems are ones I’ve faced before and know how to cope with. I already have the tools I need and use them without needing a reminder.

So I’ve talked it over with my psychotherapist and I’m quitting therapy. I know that if and when the bipolar starts giving me major trouble again, I can always call for an appointment or a telephone therapy session.

I’m not going to stop writing these posts. I still have a lot to say about where I’ve been, how I’ve got to where I am now, how things will go in the future, and all the many ways that mental illness affects society and vice versa.

You’re not getting rid of me that easily. I’m sticking around.

Many therapists and people with bipolar disorder recommend journaling as a practice that allows you to track your moods and figure out what your triggers are. And many individuals do well with journaling.

I didn’t, however. I tried starting a journal of what I was doing and what I accomplished daily. It rapidly turned boring and whiny. My entries looked like this:

Accomplishments:

  1. Paid cell phone.
  2. Forced myself to finish work assignment.
  3. Finally got off that stupid level of that horrible Candy Crush.

Writing is what I do, but journaling, especially when depressed, was an unrelenting series of pitiful nothing. Instead, I started this blog (on 1/7/14). In my blog, I could write about anything. Still, it wasn’t much good as a way to track my daily moods.

Technology is starting to address that problem. Recently some inventions have come on the market that promise to help you track your moods not just daily, but hourly (or even more often). Most of these devices resemble what would happen if a Fitbit and a mood ring had a child.

Most of them claim to monitor your moods by tracking your heart rate and/or your breathing. (One notes that it tracks your steps too, so you don’t need an extra device to do that. Another promises to monitor galvanic skin response, pulse, and skin temperature, which sounds more like a lie detector than mood tracking.) Then you take that data and compare them with what you were doing at the time and voilà – a mood journal.

Of course, these devices make certain assumptions – for example, that when your heart rate is elevated, you are anxious or tense. Needless to say, there are plenty of other things that can raise your heart rate and breathing. Sex, for one. Or running. Neither one of which is necessarily a source of anxiety for everyone. There is, as far as I can see, no way for the device to tell when you are depressed. They appear to assume that everything except anxiety is normal.

Then there’s the fact that you still have to journal. The devices work on the theory that you can look for patterns in your breathing and respiration, then figure out what you were doing when that happened. Upgraded devices and apps are planned that will add calendar and location functions to make this easier. But if you’re in your house the whole time the moods are happening, it won’t tell you much.

(One brand of these devices is available only from an employer, health plan, or EAP, which, if you ask me, is pretty creepy. If there’s anyone I don’t want to have information about my moods, it’s my employer.)

My friend Mike came up with an in-between solution that uses both higher-tech and lower-tech approaches to monitoring his moods. Over a period of several months, Mike had been on four different drug regimens for depression. Not all of them worked, and he was unsure which did the most good.

His idea was to go to his social media and chat apps and take a look at when he was the most active, engaged, and responsive. Then he looked at what medication he was on at the time. He noticed, for example, that in the first few weeks of April, he was posting more about accomplishments and responding to others’ posts and chat messages. A quick check of his pharmacy records and he had a pretty good idea of which medications were working best. No journaling involved – the evidence of his increased energy was right there in front of him, already recorded. And no $150 expense for an emotional tracking device.

Maybe journaling is right for you. Maybe a wearable mood tracker is the thing that will help. But don’t overlook the tools you already have. Think about them in new ways and you may already have a handle on understanding your moods and meds.

Sources

https://www.l2inc.com/daily-insights/spire-wants-to-be-the-fitbit-for-your-emotions

https://www.entrepreneur.com/article/239743

http://nerdist.com/sentios-feel-wristband-fitbit-for-your-emotions/

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