Not All Cushing’s Disease Cases Are Alike

It’s not uncommon when dealing with a rare disease diagnosis to want to draw comparisons to another person’s disease experience. But that’s not always helpful.

In my junior year of college, I took a class on criminal investigations. During one of the classes, the professor staged a fight between two students that he then instructed the class to provide witness accounts about. (Nobody in the class knew the fight was staged except the professor and the two students). Even though the entire class witnessed the same event, the class offered up more than 20 different interpretations about what had occurred.

The point of the lesson was that everybody had a different experience of the fight, even though every person in the room witnessed it as it was happening. The professor said that a witness might even change his own account if he were to take more time to think about what he saw.

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I think a similar lesson could be drawn from our own individual experiences with disease. Those of us who have been affected by a pituitary tumor or Cushing’s disease may have had similar symptoms — such as weight gain in the midsection, memory issues, mood changes, loss of sex drive, and decreased energy levels — but our experiences might be very different.

For instance, how our symptoms were treated could be different, depending on factors such as previous medical history, allergies, the operability of the tumor, and whether the Cushing’s disease was caused by a tumor or by medication.

Many of us might struggle differently with our diagnosis and in dealing with a rare illness, with not knowing what is happening to us. We might also be presented with different treatment options, and we might have different post-operation experiences with things like recovery time, remission, results, hormone regulation, the possibility of developing diabetes insipidus, and the possibility of the tumor returning all factoring in. Once a pituitary tumor was diagnosed as the cause of my own symptoms, I elected to remove it through gamma knife transsphenoidal surgery.

It’s for these reasons that it’s never a good idea to put too much weight in another person’s disease experience. While I think it is always good practice to be understanding about what someone else might be going through, we shouldn’t try to draw too many conclusions about someone else’s disease experience as we try to understand and come to terms with our own disease.

The human body is a complex organism, and each person can encounter a different set of circumstances in their disease journey. One person’s experience is his own, and might not be like someone else’s. Knowing that can go a long way toward understanding our illness and directing how we respond to it.

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Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.