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2 Strategies I Use When My Illness Feels Like a Waiting Game

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Most people who go to the doctor wait for results. Often the outcome of the results is not is critical to them and they are expecting normal outcomes. But for those of us with chronic illnesses, each trip to the doctor that requires tests and a wait for results can be filled with anxiety.

Eight years ago I was diagnosed with a pituitary adenoma. In two days, I underwent five MRIs, multiple blood tests, saw my primary care physician, an endocrinologist, and a neurologist. My world changed after that week. I had a slow growing, benign tumor that was currently inactive. (Inactive means that it was not affecting my other hormone production at this time. The pituitary runs all the hormones in the body.) Now my life was divided into six month intervals of blood testing, then I wait two weeks for results. Each year I had an MRI. It seemed like I was always waiting to be tested or waiting for results. I was not really living.

Then I made a decision. I would not let my health rule my life. I would not think about my tumor until it was time to be tested and for the actual two week waiting period for results. During that time and that time only, I would worry as much as I felt necessary and utilize the support of family and friends. The moment I made this decision, pushed my worries away, and focused on living my life and my attitude improved. I felt happier. I chose to do things with friends. I exercised more. I looked forward and felt I had a future.

Was this strategy permanent? It worked very well until the day my results came back active. I have to wait six weeks to repeat the test and see if the results still show that the results are that my tumor is active and affecting my hormones. Then decisions will be made about treatment, which is usually brain surgery. The waiting game is on. I am having a tough time but am focusing on how to cope with this.  My husband is unable to face uncertainty and cannot talk about it. On the other hand, I am a planner. I want to talk about every option under the sun that could happen and how to handle it. To deal with this six weeks, I am turning to my mom, best friends, and close Facebook friends to chat, to share feelings, to discuss options, and to discuss potential plans for various outcomes and seek information. It helps me to deal with the feeling of being “not in control of my life” to try to control some parts of it and to vent.

The waiting game is truly difficult. My first strategy is to live life fully and ignore the issue until the time of testing. My second strategy, given a positive test result that must be confirmed, since I personally cannot ignore it, is to plan for as many contingencies as possible to feel in control of my life and to gather support from family and friends. Hopefully these are helpful to others facing similar “waiting games.”

Getty Image by tommaso79

Originally published: September 12, 2018
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