How Repetition Taught Me Patience on the Road to Diagnosis

While chronic illness comes with many unknowns and changes, it can also involve a lot of repetition.

I was diagnosed with cyclical Cushing’s disease in 2016. The years leading up to my diagnosis were full of repetition as my medical team searched for answers to why I felt so unwell and why my health had worsened dramatically.

I had to repeat the same tests multiple times in the search for answers. With cyclical Cushing’s, test results aren’t always black and white. Cortisol levels can fluctuate often, in no clear pattern, making it difficult to identify an issue.

For me, this meant that I had to spend several weeks tracking my cortisol levels via daily saliva tests that I’d mail to the lab. I repeated many lengthy tests to find a pattern and understand what was going on. During this testing process, my medical team had to be flexible, and I had to be patient.

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I repeatedly had to advocate for myself and my needs and prove that what I was dealing with wasn’t normal. Weight gain, unrelenting fatigue, migraines, vomiting episodes, and pain were unusual for me. I couldn’t accept that these symptoms were becoming my norm, as they were so disruptive to my life and functioning.

Feeling physically and emotionally miserable also became repetitive as I struggled to function with my symptoms. The disruption was often abrupt; I would wake up with a migraine and vomiting episode that would leave me stuck at home for the entire day. I might’ve known that a flare was coming, but I couldn’t predict when. My symptoms continued to worsen and test my mental limits.

I began to roll with the repetition and tried to use it to my advantage. When I was going through a difficult flare, I would try to focus on the nice things I’d do for myself once it was over. I would treat myself to something good and spend some time outside after being confined to my room for a few days. When I was going through lengthy tests, I focused on affirmations to keep my spirits up. Though the difficult times were repetitive, so were the positive times.

It was important for me to try and attach something uplifting and healing to these tough experiences. I made an effort to do things outside of appointments, research, and self-advocacy. Through the repetition, I focused on the fact that this process was bringing me closer to a diagnosis and answers.

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.