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?