How I learned to confront my fear of recurrent Cushing’s disease

For Cushing’s disease patients with a pituitary tumor, transsphenoidal surgery can help them achieve remission. But as with many other diseases, there’s a chance of recurrence. Surgical remission rates currently range from 65% to 85%, which is a large enough window to cause fear about recurrent disease.

When I was diagnosed, I believed my life would return to normal after surgery. But that wasn’t the case, as I became burdened by fear and anxiety. I remember coming out of surgery disoriented, with head pain and nausea, and thinking, “They didn’t get it” — “it” meaning the tumor.

Fear lingered in the background as friends and family asked me how I was doing. I observed my body closely to see if my symptoms were improving or getting worse. But it was hard to tell what was what from day to day, week to week, and even month to month.

I eventually realized that I was allowing this fear to overcome me and rob me of my peace. Every time I felt an ache, I got scared. When I couldn’t sleep at night, I was convinced that Cushing’s had returned. I felt like a prisoner of the fear.

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How I coped

The biggest hurdle I needed to overcome was acknowledging the fear for what it was. I took a break from some of my online support groups. Although these groups are extraordinarily helpful in many ways, they also caused me anxiety. I’d started to focus on posts in which people said they were having a recurrence. My mind was jumping to worst-case scenarios. I realized I needed a break from social media to start finding peace.

I also talked openly with my therapist about all of this. She acknowledged and validated my fear, but also helped me realize that worrying wouldn’t stop bad things from happening. Additionally, many of my friends served as exceptional buffers.

Finally, I realized that I don’t know what I don’t know. Recurrences happen. I need to be realistic about its possibility, but I also can’t allow fear to consume my life. Once I realized this truth, I began to feel liberated.

How do you overcome fear and anxiety about recurrent disease? Please share in the comments below. 

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.