Sunday, April 5, 2009

Blueprint for Recovery - YOU Are the Authority

Last week, I spent three days at a schizophrenia conference listening to some of the smartest people in the world, and I have the autograph of a Nobel Laureate (Arvid Carlsson) to prove it.

But the people I learn from the most is you - patients and loved ones - and I have this month's latest survey to prove it.

"What is holding you back most in your recovery?" I asked you over the month of March. 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 you checked off, "Unresolved illness symptoms." In other words, a full 65 percent of you felt that your illness no longer posed an obstacle to your recovery.

Does this mean psychiatry has a high success rate? Um ... not exactly. In my January survey, only 14 percent of you told me that you "were back to where [you] wanted to be or better than [you] 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:

Fifty percent of you (representing by far the largest total) responded that the thing holding you back the most is "fears/difficulties in dealing with people." Very closely related (at 35 percent) is "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 you are telling me 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.

Half of you are telling me that you 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 have identified this issue as your top priority. Please do not hesitate to act.

Also related to this (at 32 percent) 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.

We all have "bad personal habits" (even those with good personal habits), but 36 percent of you felt they were impeding your progress. Likewise, 30 percent of you report that "making excuses" constitutes a major problem.

Congratulations at setting out a recovery agenda: You need to change; no excuses. But do keep in mind: Change does not come easy. Set modest goals, forgive yourself when you mess up, and make full use of peer and professional support.

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

Take home message: 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

I can say this with great authority, because this is what you - my valued readers - have told me. Be smart. Live well ...

Previous survey results:

Have Our Treatments and Therapies Failed Us?

Meds and Wellness: Like Rolling a Rock Uphill?


Louise Woo said...

Hi John. Interesting survey results, but I wonder about one option not listed in your survey: Secretly do not want recovery.

People who are "well" usually assume everyone should want to be like us -- that is healthy, fully-functioning, independent.

But decades of living has shown me this is presumptuous. Many, many people do not want full recovery because it would force them to take full responsibiltiy for their lives and relinquish the power of being "needy."

I don't say this with regards to just mental illness. As a matter of fact, I see it MOST commonly with phyisical illnesses. How many people do you know that will NOT follow their doctor's recommendations to treat heart disease, high blood pressure, diabetes, etc.? I'll bet everyone here can name several people in their circle of acquaintances who fall into this category.

I think of this on a day after one of my friend's mother just returned home from another stint in the hospital and rehab nursing care. This was the fourth or fifth stint in the past two years. Who knows? We've lost count.

Every time this older woman returns home, she immediately disregards all the orders her doctors just gave her to stay out of the hospital. She has renal failure and begs to drink coffee and alcohol, won't drink water, exercise, etc., etc.

Her children and other family members have thrown up their hands in disgust over the years. She clearly has NO desire to get better because then she couldn't have the entire family running around to wait on her hand and foot day after day. It has been like this for year. This is her keep to maintaining family control: Stay sick.

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?

Somehow, we all need to stop being in denial about this choice.

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.

I am thinking primarily of many stubborn elderly people I know: people with emphysema who won't quit smoking, with high blood pressure who won't change their diet, etc. It is very frustrating if the families are working towards recovery, but the patient is NOT!

John McManamy said...

Hi, Louise. I hear you loud and clear. Believe me, I run across people all the time who lead lives in total violation of promoting good health. It's one thing if they have made a conscious choice. It's another thing when they play victim.

I'd love to figure a way to get a read on the situation. Nobody is going to respond "No" to "Do you want to recover?" or "Yes" to "Do you wish to stay sick?"

Hmm ... thinking cap engaged.

Lizabeth said...

I worked as a registered nurse for many years and I think Louise is perhaps overestimating willpower and underestimating the power bad habits have on people. I nursed a lot of people who simply would not follow doctors orders--even after we nurses had translated them into plain English. They knew what their choices, or perhaps more accurately, not choices could do. But we aren't the only people who have to deal with that River in Egypt--Denial. And smoking is the worst habit to break, I have known people who kicked heroin and alcohol and still smoked like chimmneys.

And the people who thought their illness was their only way to keep their loved ones with them were the saddest of all to take care of.

John McManamy said...

Hi, Lizabeth. It sounds like you and Louise are very much in agreement, with room for interpretation on the willpower thing. The points both of you raise have primed my brain, so to speak.

With me, my diagnosis 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 means I was encouraging people close to me to see me as my illness, which is definitely unhealthy.

Then all the destructive family dynamics that you and Louise talk about kick in.

Mind you, seeing myself as my illness worked for me for a little while. It gave me a fresh start. It allowed me to take a personal inventory in a way that I could plan my life to take advantage of my strengths and to be mindful of my weaknesses.

Luckily, my illness is more of a speed bump compared to what I've seen a lot of others contend with. In a different context, I could have been overwhelmed. Then I would have had no choice but to adapt to a world where my only power resided in manipulating people.

You've both given me a lot to think about. So I'll put those initial impressions on the table for now, and see how this develops ...

Claudia said...

WILLPOWER - a big word. I want to be well (most of the time), but I've talked to my therapist many times about getting involved in things where I would meet other people - I have to admit that I haven't made too many attempts, though. Not because I don't want to, but because I'm afraid and don't have enough willpower to just do it. And then there are plenty of people who believe that being depressed is due to a lack of willpower. My parents have raised me and my siblings in the belief that all you have to do is "pull yourself up by the bootstraps". I know that it doesn't work like that, but ow much willpower "should" you have? What can you accomplish with willpower? Does everybody have a different amount? What does it mean if you don't have willpower? How do you get it? Are your problems your own fault if you don't have willpower to resolve them??
Any input would be welcome!

John McManamy said...

Hi, Claudia. Very good question. I think trying to have more will power sets us up to fail. I prefer "smart power." An example:

Say you need to lose ten pounds. You can eat less, but sooner or later your cravings are going to overtake you. Then you wind up feeling miserable for failing and you blame it on lack of will power.

Or you can decide - instead of a high-fat muffin you will eat a low fat muffin. Instead of applying large portions on a big plate, you will pile smaller portions on a smaller plate.

Then you figure out that the low fat muffins taste pretty good and that the smaller portions fill you up, and suddenly this is part of your normal routine. So you stick with the program and keep off the weight you've lost.

Now you have something good to feel about.

With exercise - you set yourself up to fail doing exercise you hate. Take a dance class instead, or go for walks. Or find a fun sport you can engage in with friends (I do water volleyball).

Also, engage the support of friends. If you don't have these type of friends, plug into various social networks ( is a good place to start). It's easy to lie in bed or mope around the house if we are going solo. But it's a different story when we're committed to a group (say a yoga class that you paid for).

Then it's simply a matter of getting out the door. I wouldn't call this will power. I'd call this motivation. Often, it's hard to get motivated. Let's put it this way:

The times you most want to stay in the house are the times you most need to get out of the house. Let that be your motivation for now.

Please keep checking in. As all of us know, none of this is easy. But it doesn't have to be impossibly hard, either.

Louise Woo said...

I think "willpower" is a different subject altogether.

I'm not talking about willpower to do BIG things like losing 50 pounds (very tough) or quitting smoking (an addiction.)

I'm talking about WILLFUL disobedience of necessary prescriptions to even BEGIN to become healthy.

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.

My late mother-in-law was another classic example. We hired a friend as a chef to cook special low-salt food for her diet. Great-tasting custom chef food! She would leave it in the freezer and not eat it or leave it in the fridge until it went moldy. Instead she'd order high-salt take-out delivery. Of course she died of a stroke.

No, just to clarify the subject, I'm talking about the oft-undiscussed possibility that many people actually REFUSE to get well -- for whatever reason (usually family control).

I've seen enough of it to know it's not "I can't" willpower. It's F-You. I WON'T and you can't make me!

John McManamy said...

Hey, Louise. This very much needs to be said. My mom is a model of compliant behavior. She does what she needs to do to stay in good health, and is an inspiration. She is in her 80s and is in better shape than people 40 years younger.

There is will power and determination and motivation involved, but it all boils down to the fact that she is smart enough to do as she is told.

She amazes her doctors by actually following their orders.

Two other members of my family, on the other hand, (one deceased) thought they could write their own rules. As if the laws of cause-and-effect did not apply to them.

If they were small children, you would call them oppositionally defiant. Definitely, as you put it, "F-You. I WON'T and you can't make me."

And of course they played the manipulation card to the hilt.

I wish I could say these individuals were a rarity, but my experience tells me this is not the case.

rgterry49 said...

Hi Folks,

Behaviors like that tend to culminate from past successes at getting what you what. We all want things and throughout our life we experience different successes or failures in trying to achieve what we wanted at that time. Many children learn early that "crying" got them a bottle or a diaper change or just attention. So, they continue to do that as each successful cry got them what they wanted. It usually becomes the bases of how they behave as they get older. For instance, a child of 4-6 years of age wants a candy bar at the check-out counter. You say "no" to the child and suddenly the child starts to cry a little in hopes that will get them the candy. You say no again and the child steps up the crying to see if that will work. This will go on till you either; give in and reinforce that behavior or you endure the stares of an annoyed audience and in effect teach the child that kind of behavior will not work.

I know that you probably already know that about child rearing. But, as the old saying goes; if they are going to act like a child treat them like one.

I am bipolar, and a widowed single father of a bipolar son. Before I found out I was bipolar I learned to control those behaviors that people didn't like in me. It took 3 failed marriages and 3 other failed relationships (30 some years) to figure out that I was trying to minipulate people. I unlearned those bad behaviors, learned control of myself and I am now teaching my son not to go down that road. He was well on his way to being a controller and his mother was enabling it. She was controlled by her mother and daughter already. And I couldn't get her to see it. My wife died 5 yrs ago from an asthma attack and I have made a lot of progress (documented by professionals) in undoing my son's bad behaviors. I also found that home schooling and controlling his social interactions with family and people at church had made a lot of difference. I had no control of him while he was with his mother and her family and in public school. The problems would mushroom into misunderstandings. And I find that homeschooling is really quite fun.

I don't know if this helps you or not. But, maybe it might fuel your insight.

I trust in my God and my Savior to help me through the tough times.

Lizabeth said...

Control is always a big issue and very sick people often feel all control is taken from them. This is very bad for adults. Nothing gets you to want something like an authority figure (the Doctor) telling you you shouldn't have it. Look at us trying to make healthier lifestyle choices. I know I often fall to the CHOCOLATE. Doing good with everything else tho so I often let the chocolate slide in.

And the renal diet is hard to follow and for someone used to choosing their own foods, it has been described as a prison sentence--and that description comes from renal specialist nurses who were explaining it to some of us.

For a child you can do a lot with controling the environment but you can't do that with another adult.

Med compliance everyone???? Yes, I know side effects are a big factor but I think some rebellion against the "musts" and "shoulds" from our "authorities" sneaks in too. I do not like my "kinder gentler Geodon" but so far I am taking it because my pdoc worked with me to make the choice--she didn't act like God and shove pills at me.

It is only when people commit to self-management of whatever the problem is that progress is made. Noncompliance often has secondary gains attached that trump(at least in people minds) the gains compliance would give them too. The whole situation is hard on everyone.

Ksenya said...

Very interesting survey results and even more interesting discussion.
I believe we all have enough willpower to stay healthy and alert and kick any kind of habit. The problem is we are too lazy to do self-management and find out which habits affect our lives and get rid of them. It's not easy and requires a huge amount of will- and brainpower.
Our bad habits are so soothing, they make our mind too comfortable and numb. And that's where the problems start...