The Difficult Side of the Healing Process
One of the biggest lessons that I learned on my Cushing’s journey was that listening to my body wasn’t always what I wanted to do, but it’s what was best for me.
My journey with cyclical Cushing’s disease spanned several years, with my symptoms first appearing in 2011. I was struggling with daily headaches, fatigue, brain fog, and joint pain. During this time, I longed for answers, wondering what hope they may or may not bring. That hope helped carry me through some of the most difficult times.
But even after I was diagnosed and had transsphenoidal surgery in 2016 to remove my pituitary adenoma, I still found myself struggling with symptoms and wondering when my health would improve.
I had to learn to manage my expectations. I wasn’t going to wake up from surgery and feel back to my old self, despite wanting that so badly. It would take time and effort to heal.
Healing is a process — one that often doesn’t look pretty and takes much longer than anticipated. It requires time, patience, and work, which involve taking a step back and listening to what your body needs.
When I was recovering from pituitary surgery in 2016 and 2017, taking steps toward healing felt like failure to me. Flares and relentless fatigue would force me to take breaks — my body’s way of showing me that I needed to slow down. I wanted to be better, but my mindset wasn’t helping me.
I found myself holding on to the expectation that I would soon be as healthy as I once was. I learned through tough lessons that healing looks different for everyone. For me, that meant my healing spanned multiple years post-op.
I had to learn to be gentle with myself and appreciate the small steps toward healing. I was able to truly start healing when I let go of unrealistic expectations. I realized that although the growth I was experiencing was not what I had initially expected, it was still growth. I learned the importance of celebrating the small victories.
I celebrated when my pituitary gland finally “woke up” and started producing adrenocorticotropic hormone, or ACTH, again in 2017. I was able to wean off the steroids my body had required post-surgery.
I learned to appreciate my ability to tolerate a routine again. I could get back to cooking meals, which I hadn’t been able to do for months after my surgery.
I worked on being thankful for my ability to walk a few blocks, rather than focusing on when I’d be able to run a mile again.
I began to celebrate how much I had been through, instead of thinking about how much I’d lost during my years of struggling. That was a sign that I was truly healing.
Healing is a continuous process, which took me time to realize. Now six years out from surgery, I continue to heal and make progress.
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