The onset of Cushing’s syndrome is often gradual and cumulative. The illness seems to unfold its harmful potential over the course of several months or years. Cushing’s syndrome, because of the effects of hypercortisolism on the central nervous system, deeply affects the psychological state and balance of a person and these effects develop insidiously. No other medical disorder is associated with such a high rate of depression as Cushing’s syndrome (50-70% of cases).

In Cushing’s syndrome, and in general, depression often begins with the patient who retires from usual social activities and, if forced into social situations, seems to be uncomfortable. Work takes longer to complete and is carried out with great difficulties. Indifference sooner or later is replaced by sadness; an overwhelming sense of inner emptiness and despair. Whatever is experienced seems to be painful. Past, present and future take a gloomy shade. Fatigue, sleep difficulties (particularly early morning awakening), and trouble concentrating ensue, often associated with irritability, guilt and anxiety. How a person experiences the pathological process, what it means to him/her and how this meaning influences his or her behavior and interaction with others, are all integral components of disease.

Physicians, however, are inclined to neglect the personal experience of illness and to concentrate their attention toward overtly physical symptoms and objective measurements. If and when Cushing’s syndrome is properly diagnosed (for still too many patients, this seems to be an endless process), the diagnosis itself is perceived as “the end of a nightmare” – as a patient of mine stated. The patient then eagerly waits for the expected treatment. Particularly when surgery is involved, an immediate cure and restoration of well being are expected. Even when things turn out well, however, recovery is not immediate and seems to drag on. The patient feels better, much better; but does not feel fine. “I am no longer the one I used to be” is a frequent complaint. “I am disappointed that recovery from the disease is going to take so long,…” a patient wrote in his personal account of Cushing’s syndrome. “I am not ready to go back to work, to do the things I used to do” is the next logical step.

Something that is often neglected is that the process of recovery is a long and winding road. There are as many ways of recovering from illness as there are ways of becoming ill. Often, the duration of the process of becoming ill dictates the duration of convalescence. This is a general principle that applies to many illnesses. For instance, chickenpox has a quick onset and rapid recovery in children, whereas it develops insidiously and tends to last longer in adults. Recovery from Cushing’s syndrome has a natural course to run (usually more than 6 months), even when everything turned out O.K. (surgery, post-treatment hormonal values, regression of physical signs and symptoms, etc.). The speed with which it happens, however, may depend on several factors.

First, as it has been frequently emphasized in this newsletter, maintenance medication should be properly individualized. Different dosages of glucocorticoid replacement (when indicated) may entail different psychological effects. It is thus crucial to check with one’s endocrinologist during the follow-up period.

A second issue applies to many disorders. Avoidance is a big enemy of the recovery process. While not all patients are able to resume work or other activities the same way they did before falling ill, in Italy, it is very unusual for a recovered patient with Cushing’s syndrome not to go back to work, if he or she worked before. One should go back to work when told they are able to do so by his/her physician. In some cases, if a patient waits to be ready to return to work, they may never be ready. Even if one isn’t able to return to work, one should start doing things again. It will be tough, painful, and frustrating at times. Avoiding situations that induce undue anxiety first relieves the distress, but then results in its further increase and perpetuation. Anticipatory anxiety can be defeated only by regular exposure to the anxiety-provoking situations. Not only is it important to resume work if feasible, but also to gradually go back to all activities one was used to doing. Similarly, depression is fostered by the time spent ruminating about the past, worrying about things to come, and indulging in self-pity.

Third, specialized help may be sought if psychological symptoms (particularly depression) persist, even a few months after surgery. A psychiatrist is the first choice because he/she may decide about the opportunity for short-term drug treatment with antidepressants. Some patients received these drugs before their illness was properly diagnosed. At that time, the drugs did not help, thus patients are skeptical when they are prescribed again. But, the same antidepressant drug which did not work in the presence of hypercortisolemia, may work when cortisol levels are normal. Yet, one should remember that self-therapy (exposure, scheduled activities, reaction to depressive thoughts), is in any event the main form of psychological treatment.

Recovery from Cushing’s syndrome has its ebbs and flows. Some days you feel great, and some other days, awful. Some days you feel you will make it, the next day, like you won’t. As long as you keep a positive attitude (focusing not on the distance from your established goals, but on the progress you have made), overcome your impatience and are not ashamed of seeking specialized help, if needed, you will make it.

References

Armstrong, A. The Phenomenology of Cushing’s Syndrome: One Patient’s Account. Henry Ford Hospital Medical Journal, 1991; 39:8-9

Author: Dr. Giovanni A. Fava, MD (March, 1997)