Question: My doctors say that I am cured from Cushing’s, but I have so many continuing problems such as fatigue and pain. My doctors feel that they have done all they can to help me. Do you have any suggestions as to how to emotionally cope with these continuing problems?
Answer: In many illnesses there is a discrepancy between physicians and patients as to the meaning of cure. If a patient has shown a good response to treatment, physicians tend to focus on the progress that has been made and to underestimate the distance from the expected goal. For the patient, it is just the opposite. Even though they are aware they feel better, they tend to overestimate what is still missing. Fatigue and pain may be two considerable problems and the road to full recovery may appear to be endless. In this situation it is helpful to look back for a moment: How was I doing immediately after surgery? Six months later? Now? One should focus on the progress that has been made, confident that further progress may ensue in due course.
Question: I have so much anger towards my doctors who misdiagnosed me for years. Even now, I feel like they don’t take me seriously. I’m also angry that this happened to me. How can I get rid of my anger?
Answer: Cushing’s syndrome is not a disease that is easily diagnosed. The reasons are many (it is complex, deceptive, not well known by many physicians, etc.). Unfortunately, a rapid diagnosis seems to be the exception instead of the rule, yet this is difficult to accept. One may start thinking and ruminating on the time, money, and medical consultations that got wasted with increasing anger and resentment. This however leads to nothing. What is important is that the illness was eventually recognized and treated. Medicine is not what is portrayed on T.V. It is more difficult, complex and, at times, frustrating. We do our best, but our best sometimes is not sufficient. When you start ruminating about the past, tell yourself “stop”. Go do something, no matter how trivial it may be. This will help get your mind off of what is past.
Question: I have been free from Cushing’s for over two years and most of my symptoms have resolved, however, mentally, I am still not as sharp as I used to be. It is difficult to explain, but I just feel “off”, I am more forgetful, and find myself in a room wondering why I came into that room. My math and spelling skills are also substantially less than what they used to be. Is this normal for post-Cushing’s, will this improve more over time, and is there anything I can do to help my “brain power” recover?
Answer: Hypercortisolism is likely to affect cognitive functions. Depression particularly impairs concentration. When both are present, as in many cases of Cushing’s syndrome, mental functioning can be affected. When cortisol levels go back to normal and mood improves, once again one would expect a rapid return to normality. However, this is generally not the case. There are also patients who report a worsening of their memory, spelling, etc. after cure of Cushing’s syndrome. It is important to consider that the mental function that is most frequently affected is concentration, not memory. You do not remember things because you were unable to pay sufficient attention to it. Regaining concentration requires a prolonged effort. If you simply say “I am not the one I used to be” and stop trying, concentration will never come back.
For example, in Italy, male college students who are unable to pass a required number of exams, have to leave college for military service. For one year, they are generally unable to spend any time studying. When they are back to college, they often have trouble studying again. Their concentration skills seem to have deteriorated. These skills come back only after months of struggles and attempts. Yet, these students are physically healthy and nothing detrimental to mental function has happened to their body. In the setting of Cushing’s syndrome, such problems are increased. Concentration can come back, and other cognitive functions as well, but you should keep on trying. Further, one should consider that the brain is extremely sensitive to cortisol levels. If the illness has been prolonged, a readjustment may take place, but is likely to take a long time, much longer than the other parts of the body. Regaining mental efficiency requires application and endurance. Time is on your side, but only if you work on it and try to improve your concentration day after day. Simple things that you can do to help include reading, doing puzzles such as picture puzzles, crosswords, and math puzzles. You might also practice memorizing some of your favorite quotations, or other things that you find interesting.
Question: What can family members do to help a person with Cushing’s cope with the emotional aspect of the disease?
Answer: In the acute phase of illness, particularly when depression occurs, patients may view themselves, their future and their relationship with others in a very distorted, pessimistic way. They may be irritable, tense, moody and display overwhelming anxiety, helplessness and hopelessness. A patient once told me, “If I do something wrong, I keep on thinking about it. If I do something right, I forget it immediately”. Family members may be important in reminding the patient that these feeling are an expression of their illness, hypercortisolism, and should not be considered as coming from the real self. These feelings will fade away with treatment as will other symptoms.
As to the recovery phase, excessive dependency on family members is not beneficial. Patients should be encouraged to seek their autonomy, no matter how hard this can be at the beginning
Question: Can religion or belief in a Higher Power play a role in the recovery and healing process?
Answer: From a purely psychological viewpoint, which is the only one that is pertinent here, if religion or belief in a Higher Power is a source of optimism, hope and conveys a positive, active, attitude, it can help the recovery process. If the patient, however, perceives that he cannot do anything for himself and help can come only from God (and some religions convey this passive attitude), it may also make things worse.
Author: Dr. Giovanni A. Fava, MD (June, 1996)
Editors Note: Dr. Fava is a psychiatrist at the University of Bologna, Italy. He has over 15 years of experience in dealing with psychological aspects of Cushing’s syndrome. He collaborates with his wife, Nicoletta Sonino, MD, a leading endocrinologist in the medical treatment of hypercortisolism.