A chronic illness like Cushing’s is likely to change your life in many ways. You may have had symptoms from excessive cortisol levels for a long time before Cushing’s was suspected and finally confirmed.
Diagnosis is oftentimes followed by surgery and may also involve being on medication or receiving radiotherapy. Your illness is likely to have affected your appearance, your physical and mental abilities, and your independence. You may not be able to work or may need to reduce your workload, which can cause financial problems.
These tremendous changes are reason enough to cause stress, anxiety, frustration, anger, and depression — mood states that also diminish your quality of life. This is where coping comes in.
In psychology, coping is defined as a person’s own conscious effort to deal with difficult situations or life periods. This is accomplished by using things called coping styles or coping strategies.
While growing up, we learn different coping strategies, and some of them help us solve problems throughout life. These are called adaptive (constructive, active, or positive) coping strategies.
“Active coping” involves mobilizing one’s own resources and employing strategies like seeking information to better understand and deal with the illness, as well as engaging in problem-solving efforts.
Also, the so-called coping strategy “distraction/self-affirmation” is viewed as positive since it comes along with behaviors where someone is able to distance and divert themselves from the disease, such as by having a massage or going out with friends. This strategy also involves encouraging oneself, such as by seeking success in what he or she is doing. Additionally, religiousness is viewed as one of the more constructive coping strategies, since it can help people accept the disease and gain comfort through their belief in God.
On the other hand, there are also negative coping strategies, such as avoidance, disengagement, denial of the limitations set by an illness (also called “minimizing importance”), and “depressive coping,” which is accompanied by pitying oneself or withdrawing from others.
These negative coping styles affect our quality of life and well-being in unfavorable ways, and are, therefore, called maladaptive coping styles.
Research on patients with diseases like cancer, multiple sclerosis, or diabetes mellitus has shown that patients who use negative ways of coping have a worse quality of life and more depression that those who employ more positive, adaptive coping strategies. Studies on patients with Cushing’s demonstrate that quality of life often remains impaired years after successful treatment, even though the disease may be well-controlled or in long-term remission.
In order to find out whether the coping strategies used by Cushing’s patients relate to quality of life, our group designed a study in which we sent out questionnaires on quality of life, depression, embitterment, and coping strategies. These questionnaires were sent to more than 300 patients with Cushing’s disease who were treated at three major German university centers (Essen, Tübingen, Erlangen). One hundred and seventy-six of these patients returned completed questionnaires and were included in the analysis.
Our patients who answered the questionnaires were on average almost seven years removed from their last pituitary surgery. Nevertheless, the overall degree of psychosocial impairment (poor quality of life, depression, anxiety, embitterment) remained high.
At the time of the study, 21.8 percent of patients suffered from anxiety, 18.7 percent experienced an above-average feeling of embitterment (compared to the reference values of healthy people), and 13.1 percent suffered from depression. Our statistical analysis showed that patients who often used negative coping strategies had higher levels of depression, anxiety, and embitterment, and a poorer quality of life.
Patient and illness-related factors like sex, age, or hydrocortisone intake as a measure of secondary hypoadrenalism had no such influence on their well-being.
In our eyes, this finding has a huge implication for patients with Cushing’s disease, because it shows how coping is a behavior that can be modified. Positive coping styles can be learned or reinforced.
While there are currently no special programs to help Cushing’s patients cope with the particular aspects of their disease, most beneficial coping strategies are universally useful. Examples include learning to look at obstacles in a positive way, accepting the illness, or building on social support and communication.
Regardless of whether one has had Cushing’s disease or not, each of us is different in how we cope. Thus, each person needs to identify coping strategies that work best for them. Counseling may help determine what coping strategies a person currently uses, and develop positive coping strategies, if needed.
The results of our study indicate that developing positive coping strategies can be a way to help people gain back quality of life in spite of the limitations Cushing’s may cause.