Adjusting to Medical Illness

The psychological ability to adjust to chronic medical illness is an area where there has been very little study.  Lately, I find myself working mostly with this population of people.  I’m noticing that some adjust very well and some do it very poorly.  It depends on a lot of factors.

The situation is clearest when the illness we’re talking about is back or neck pain.  Back pain, more than neck pain, has been clearly correlated to the presence of major depression.  If a person walks into the office crying and says they’re having trouble controlling what’s going on, it’s a pretty sure bet we’re dealing with depression.

Most back pain patients aren’t prepared for the kinds of life adjustments they are required to make.  Generally, many will need to switch from a job that has involved lifting or other physical work to a job that is more sedentary.  Quite honestly, most back pain patients are in no way prepared to do this.  Mostly, this is because anything that is sedentary is going to require a higher level of education.  Most of the folks I’m seeing are not highly educated, so the back pain leads to incapacity.

Most of the time, it is simply not possible to document the reason for back pain.  Sometimes, these people have had diagnostic help from some of the more modern techniques such as an MRI.  To my surprise, others have had ancient imaging techniques such as myelography — injecting either air or radiographic contrast medium into the space between the spinal cord and its bone.  Either way, the great majority of the time there is little or no objective proof of back pain. When we’re dealing with sciatica, the chances of finding objective proof of an anatomical nature increases.

At any rate, most people who have back pain complain of a damaged functional capacity.  Even the simple act of bathing oneself can become a problem when you need someone to help you in and out of the tub. People who need showers can get safety equipment that helps, such as a shower chair.  It doesn’t have to be a specialized one.  But many people just don’t seem to think of this.  Occasionally, a physical therapist will make practical suggestions. Regardless, the people who can figure out the day to day practicum of living with back pain seem to do the best.

Sometimes people can bounce back, but those who do are typically one of the large numbers of people who have a correlation with depression and the depression is treated.  The people who don’t bounce back are often using the sick role. They’re sick of the jobs they’ve had. They’re sick of leaving the house. They seek to restructure their lives into something where they don’t have to function as much.  For these folks, there’s a tendency to project all of their needs on the need for compensation.  This really is not an answer since more care will not necessarily improve the problem.

What’s perhaps more interesting are the people who have enough intelligence to figure out ways to adapt their lives to a chronic illness, whether it be Crohn’s disease or congestive heart failure.  In general, there are very practical ways to get along with things.  People living with Chrohn’s disease sometimes exemplify their lives by something as basic as figuring how far they are from the bathroom, whereas people with congestive heart failure may simply diminish the radius of what they’re doing.

In terms of finding work they can do, the most successful are those that find something on a computer, which allows them to be more sedentary and work from various positions.  This takes a certain personality prerequisite.  People have to be willing to admit they’re going to do something different and willing to learn how to do it.  This is rare.  Instead, most people say, “I can’t do my job.  I can’t work. I need to be taken care of.”

The ability to adapt seems to be a function not just of intelligence but of a willingness to be light on their feet and change the circumstances of their life.  Again, this is quite rare.  I hardly ever hear someone say, “I can’t get a job now, but maybe there’s something I can do by myself.”

In some cases, there is no depression.  We are simply talking about an adjustment disorder. For instance, a woman who had a considerable chronic experience said, “Okay, I can do little things on the side.  I can help people with their resumes.  I can help people who aren’t literate be literate.  I can help people fill out papers for things that they need. I can help them find resources.”  This woman made that decision and put an ad on Craigslist. She said if things continued the way they were — and I was grateful she was honest about it — she would not require the kind of compensation or social security supplementation she was looking for. But this is the exceptional patient.

Friends and relatives are also a powerful resource, but they can be a detriment.  They can keep people in the stage that they’re in for their own use.  I can’t count the number of times I’ve heard, “We have to get this benefit because the whole family needs it.”  People don’t understand what they’re asking for or what it does.  They are of the do-it-for-me generation.

The difference between having a benign adjustment disorder, or a time of readjustment, and being a permanent victim depends on the way one views life.  People are not usually willing to be trained but will train themselves to be disillusioned.

The question is how can we train people so that the exception is less exceptional?  The idea of independence or self determination is a rare one.  Too many people see themselves as recipients of services and as victims.  The loss of locus of control seems to be a predictive of failure to adapt to medical illness.  How do you train someone to have an internal locus of control? Most people will choose the system where they don’t have to take responsibility and they don’t have to make decisions.

One of the quickest solutions is prepackaged. People will come in my office and ask me to pray with them, as if the idea of self-help is a distant one.  I can’t tell you how many times I’ve told them, “God helps those who help themselves.”  When people are sensitive to the polemics of either the religious or even the political type, I just look at them and say, “This is the American way.”

Anybody who can get access to the internet can find a self-help group for whatever illness they have.  This self-help group will almost always be more practical and more helpful than whatever a physician knows or can say.

The American Way — you don’t give up and you don’t surrender. People have more opportunities than ever for self-determination.  And if the answer is not immediately evident, there exists a richness of empowerment mechanisms that have never existed in the history of the world.