Friday, February 18, 2011

Never Mind Our Illness - What About the Real Stuff?

The following originally appeared as two unconnected blog posts in 2009. Last month, I connected them into a new article on mcmanweb ... 

"What is holding you back most in your recovery?" I asked readers at Knowledge is Necessity in March 2009. Readers were free to check off as many of the nine answers as they wished. (169 respondents accounted for 490 answers, averaging 2.9 answers per person.) You could have knocked me over with a feather with the results:

Only 35 percent of those who responded checked off, "Unresolved illness symptoms." In other words, a full 65 percent felt that their illness no longer posed an obstacle to their recovery.

Does this mean psychiatry has a high success rate? Um ... not exactly. In a survey from two months before, only 14 percent told me they "were back to where [they] wanted to be or better than [they] ever could have imagined."

What is going on here? Could it be that we have other stuff we need to deal with? This is where it gets interesting.

Interpersonal Relationships

Fifty percent (representing by far the largest total) responded that the thing holding them back the most was "fears/difficulties in dealing with people." Very closely related (at 35 percent) was a "bad living/work/etc" situation.

Clearly, we have major interpersonal issues that need addressing. Without doubt, our respective illnesses play havoc with our ability to get along with people. But my readers seemed to be telling me was that people problems have taken on a life of their own, and it's not hard to imagine why.

Often, we can't go back to our old relationships or work. As we become isolated and cut off, our social skills atrophy. We lose confidence. We are overwhelmed.

In essence, half of those who responded to my survey are telling me that they see the world as a threatening and hostile place, and this does not bode well for recovery. We tend to judge personal success by how well we get along with others. Unfortunately, there is no magic pill to help us. But there exists a lot of therapeutic and social help. You - yes, you - have identified this issue as your top priority. Please do not hesitate to act.

Fears and Anxiety

Also related to this (at 32 percent, one in three) is "inability to manage fears, impulses, etc apparently unrelated to your illness." Maybe you don't attribute, say, anger, to your illness. Maybe you talk too much or are afraid to speak up. Maybe going with an irrational thought makes you feel good. These are common problems that the general population also experiences, but you have added this twist - your sense of lack of control is holding as many of you back in your recovery as unresolved illness symptoms.

Your clinician may have overlooked all this, but clearly you haven't. You know what you need to do.

Bad Habits, Side Effects, Addictions, Ailments

We all have "bad personal habits" (even those with good personal habits), but 36 percent felt these were impeding their progress. Likewise, 30 percent reported that "making excuses" constitutes a major problem.

Overcoming bad habits, of course, falls into the same category as keeping New Year's resolutions. Good luck - you have your work cut out for you.

Finally: Meds side effects (24 percent), addictions (21 percent), and physical ailments (21 percent).

Tying This Into a Bow

There is no such thing as "just depression," "just bipolar," "just anxiety," and so on. A lot of other stuff is going on. Whether wrapped in your illness or independent of it, it all needs to be addressed, because if it isn't - recovery is simply not going to happen

A Reader Weighs In

Louise commented that "many, many people do not want full recovery because it would force them to take full responsibility for their lives and relinquish the power of being 'needy.'"

It happens a lot in physical illnesses, she was quick to add, patients who refuse to follow doctor's orders. For instance:

In the case of my friend's mother, she actually refuses to drink WATER. She wants alcohol and coffee, saying they "taste" better. She is in RENAL FAILURE. She is also a total "victim" control freak making her adult kids jump for every crisis - which she creates.

We all work hard to support and encourage our less-healthy loved ones to recover and live "full" lives again. But what if they don't really want to?

As for those with mental illness: "Some may say people with mental illnesses are not really making this 'choice.' But I can attest that many people with no strong mental illness problems DO make this choice everyday."

Louise was talking about willful disobedience rather than willpower, which other readers brought up. Hold that thought ...

In the meantime, Louise's comments got me thinking:

I certainly did not wish to stay sick, but I do acknowledge that being sick conferred on me a certain degree of absolution. Instead of regarding myself as an underachieving screw-up - in my own mind anyway - I could view myself as someone who overcame tremendous odds.

For the first time in my life, I actually gave myself a pat on the back.

But this came at the price of seeing myself as my illness, rather than seeing myself as me. Which meant I was encouraging people close to me to see me to also see me as my illness. Seeing myself as my illness worked for me for a little while. It gave me a fresh start. It allowed me to take stock. But once I got my illness under control, there was the small matter of working on the stuff that was really holding me back. The real work was only just beginning.

Dean Ornish Weighs In

Two months after my reader poll, I was in San Francisco, at the American Psychiatric Association annual meeting. There I heard celebrity doctor Dean Ornish of UCSF talk about smart lifestyle. For instance, in a 1998 study published in JAMA, Dr Ornish found that patients can not only stop the progression of heart disease through lifestyle management, but can actually reverse it.

In fact, smart lifestyle reliably works across a range of illnesses (including depression), and can often replace invasive and costly treatment (or at least make the treatment work better). The catch is you have to do it, and therein lies the problem. "What's sustainable," Dr Ornish said, "is not fear of dying but joy of living."

Dr Ornish is no stranger to depression, having experienced a severe episode that sidelined him from college. Loneliness and isolation, he said, increases mortality 3.7 times. Depressed individuals are more likely to over-eat, smoke, drink, and work too hard.

You would think that making a few simple changes would be easy, right?

"'Dean, you don't get it,'" his patients told him. "'These behaviors get us through the day.'"

Getting through the day anyway they could was more important to them than living to age 86. In essence, these people could see no benefit to giving up smoking if it meant losing their cigarette-smoking friends, especially if there was nothing to replace those friends.

Meanwhile, the research on the benefits of positive lifestyle kept mounting up. In one 2008 study published in PLoS (JA Dusek lead author), researchers found that the relaxation response in trained meditators switched off cancer-promoting genes.

Changing our lifestyle actually changes our genes, Dr Ornish pointed out. But who wants to change their lifestyle? What Dr Ornish finally figured out was that will power was a nonstarter for individuals, as was the motivation to live longer. "Who wants to live long if you're depressed?" he asked.

What works, he said, is joy, pleasure, freedom. Up went a slide of two tango-dancers - Dr Ornish and his wife. Doing the tango was part of Dr Ornish's exercise routine.

That's when the lightbulb went off: Yes, we need to lead disciplined lives, but we are doomed to failure unless we incorporate fun into our routines. Here, in this Recovery section, are numerous articles about the virtues of good diet, exercise, yoga, meditation, and so on. We know all this stuff works, but what good is any of it if we give up?

Then it occurred to me: None of my lifestyle routines are based on iron will. They all have enjoyment incorporated into them. For instance, my "exercise" is daily walks, water volleyball, and (off and on) dancing. My "diet" is based on my love of cooking, where anything I throw together is both tastier and healthier than restaurant food. My "stress-management" is all about building contemplative time-outs into my schedule. Even my "meditation" has a fun twist - I play the didgeridoo.

In the words of Dr Ornish: "Doing the tango makes your brain grow ... Some of the things that are most fun are good for you."

Glad I thought of it.

***

My previous three pieces reviewed a randomized, double blind, placebo-controlled clinical trial - representing the gold standard of scientific research - that told us nothing. My humble little reader poll, on the other hand, does not even meet the lowest standards of research. But I ask you: Did it tell you something?

7 comments:

Gledwood said...

i think it gets to a stage with many people where the real world and psychiatric issues are so intertwined you just have A Problem you have to sort out yourself, drs can help, medications can help, professionals can help, but we have to truly want to help ourselves and we have to want to be sane, which is easier said than done when the problem is something like bipolar where a lot of it feels pretty damn fantastic, despite the wreckage it leaves behind...

another problem with long-term illness is we can get so used to not engaging with aspects of life we just don't want to (because in acute illness we just can't) that the line between not wanting to and just not being able to becomes fuzzy and blurred

i say "we" but i mean "me" i'm in such a mess now thanks to drug addiction and what they think is probably "bipolar" i just don't know how i'm ever going to climb out

one thing i will not do is lie or exaggerate to my dr, i tell him exactly how it is, and make it plain that this is what i'm doing. i got to the stage where i was just too desperate to try and figure out what he needed to see or hear and so i went full circle and now i tell it as it is, and finally, now that i've had psychotic episodes bad enough that i just didn't know what year it was let alone what i was doing THEY LISTEN

wow!

Willa Goodfellow said...

I am currently reading Treating Bipolar Disorder by Ellen Frank, a clinician's handbook on IPSRT -- Interpersonal Social Rhythms Therapy. It's a mash-up of interpersonal therapy and circadian rhythms, with interpersonal issues addressed particularly as they support or disrupt the circadian rhythms. IPSRT has the potential, I think, of addressing many items on your list of what is holding us back, and how they are interconnected. I'll file a book report as soon as I work through my current rant.

Meanwhile, I will bite the bullet and get back into therapy. Thanks for the kick in the butt. I think.

John McManamy said...

Hey, Gledwood. Thanks for sharing this. My guess is that even though you have a lot of things to sort out, you are in a position to help others, which in turn will help you. I would urge you to check out support groups, and jump right into the conversation. I think you will be pleasantly surprised by how well your wisdom and insight goes down.

John McManamy said...

Hey, Willa. This was one of the books I left behind in NJ when my marriage suddenly broke up 4 years ago and I found myself in southern CA. I only read about the first 50 pages, so I'm looking forward to hearing from you.

I heard Dr Frank talk about this in a workshop I attended in 2001. I interviewed her in 2004, and also keep running into her at conferences. I discuss IPSRT in my mcmanweb article on sleep.

Last month I went back and integrated into the article what we now know about the CLOCK gene-bipolar connection, but I need to go back and give this stuff the full treatment.

Also - sleep as an endophenotype to bipolar. Instead of searching for the gene-biology of bipolar (which you will never find), search instead for the gene-biology of sleep and stress, which is in plain sight and which will lead you to bipolar.

Bottom line: I don't know a single person with a mood disorder who does not have a major sleep problem. Not one.

Sleep is the big one. Get your sleep/wake stuff right and the mood disorder becomes a lot more manageable. Dr Frank said as much to me in our interview. She deserves a lot of credit for getting the word out and developing a talking therapy around this.

Also: IPSRT was one of the talking therapies they investigating in STEP-BD.

I'm looking forward to reading your take on all this.

bipolarbatesy said...

Hi John,

Great Post again, I applaud your efforts to try to see the forest through the trees so to speak, with genuine reader feedback in your polls.

Reminds me that we all seem to have a public and private persona and that the official public position on mental health does not fall smoothly into line with private experience, a bit like political rhetoric and average daily life experience.

I’m reminded that relapse has a high correlation to living in situations with high expressed emotion or toxic relationships as they are called, seems to blur the distinction between brain disease and external environment somewhat.

I’m currently experiencing a long period without the classic bipolar rebound into depression after six weeks of un-medicated mania in sept/oct last year, and I’m in a new relationship with less negative feedback?

I guess I can choose to see my current experience as simply remission, as some doctors would, describing my bipolar as similar to cancer? Our I can try to see the complexity of systemic interactions between internal and external environments that may have played a part in the origins of my disorder?

Choosing the cancer analogy is certainly easier to get my mind around, although I’ve found it tough to actually live with in the past. I recall my ex-wife asking the psychiatrist about a long period of ‘wellness’ before a relapse, ‘he was just in re-mission,’ he told her which seemed to sooth her somewhat and the psych too no doubt.

Regards: “ In essence, half of those who responded to my survey are telling me that they see the world as a threatening and hostile place, and this does not bode well for recovery.”
Here is an interesting link http://www.lifespanlearn.org/documents/Porges-Neuroception.pdf

Keep up the great work,

bipolarbatesy

Kate Si said...

I'm going to agree with the sleep thing. I sleep horribly and for very few hours a night. Lately around 4. I was on medication but can no longer afford it. However even the medication eventually wasn't providing good sleep, just better sleep then I get on my own. I'm trying to go to bed and get up at the same time but I end up laying in bed for a at least 2-3 hours before passing out. Diet is as healthy as it can be. Don't eat a lot of meat or junk, basically never eat out, drink very rarely. Probably applying for food stamps which I hope will allow me to buy more vegetables. Can't afford therapy either anymore. Basically self-management is becoming impossible again and severe depression is setting in (type II).

Lately it's been that I'm only happy/normal around one or two people and EVERYONE else is noticing the bad and commenting on it inappropriately. I don't mean inappropriately like making fun of it but doing that thing that normal people do which is say that you're making them "uncomfortable with how down you are and would you please keep it to yourself." This is resulting in being isolated both by choice and not. Started doing yoga again but that has a very temporary normalizing effect on me.

I'm really at a loss as to what to do now. I can feel the sinking and I'm at the point of dealing with it where I just want it to happen.

John McManamy said...

Hey, Kate. There is nothing worse than the feeling of slipping into another depression. The depression is terrible enough as it is, but that feeling you get as it's happening or is about to happen is totally and absolutely devastating and demoralizing.

I know you've done everything you can to try to fend this off. Now you have to batten down the hatches and ride this out. The only hopeful thing I can offer is that you're probably much better at riding these things out than you used to.

It may be the same depression, but it won't have quite the same impact. We're all in your corner. Please keep us posted.