Why Information Is Important for Patients and Their Supporters

In my experience gathering and digesting information is one of the best ways of handling the shock, bewilderment, stress, and the many other emotions that are experienced both at diagnosis and in subsequent years.

As a patient you have a need to understand what is happening to you for your own sake. It can help you handle the procedures and treatment that follow when you have an idea of what to expect, how you may feel afterward, and what the expected outcomes may be. You need to be able to explain the situation to family, friends, employers, and coworkers among others: they may be equally in the dark. In the longer term, all those whose lives are affected by your condition will benefit from understanding it. You have to come to grips, too, with the complexity of the illness and develop ways of explaining the progress of treatment without sounding freakish, or by treating it superficially. This is made harder by the fact that you may appear to others as you always did, possibly better than you did before your operation, and suspicions of malingering can and do arise.

You may have had no idea of why you were sent to see a specialist. You may not have even heard of the pituitary gland and have no idea where it is and what it does. In addition, "tumor" is not a friendly word and it is made even more frightening because the brain or head are also involved. Suddenly being faced with a medical problem you have never heard of before is a very stressful moment.

Can my medical readers imagine how they would feel in a comparable situation?

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