Coping With the Changes That Often Accompany Cushing’s Disease
Cushing’s disease causes a great deal of change, both physical and emotional. For some, these changes happen slowly over time, while for others, they’re more rapid. About four years passed between the onset of my symptoms and my diagnosis. The differences in how I felt were subtle, making it difficult to pinpoint what was going on.
One of the biggest struggles I’ve faced is my shifting view of myself and my body. With Cushing’s disease, my body became an unpredictable stranger that I no longer understood. Many changes, both visible and invisible, occurred as a result of my pituitary tumor.
When a new symptom appeared, I felt even more distant from the body I once knew. Activities I once enjoyed were no longer comfortable for me due to my symptoms and fear. I no longer felt up to walking, for example, due to fatigue.
It was difficult for me to adapt activities, including coping mechanisms, to suit my body’s needs. My mindset was all or nothing: If I couldn’t walk at least a mile, I couldn’t walk at all. Besides, I was so exhausted from scheduling doctors’ appointments, tracking symptoms, and following up on other health-related issues that everything else felt like a chore, including self-care.
Without the coping tools that once brought me joy and stress relief, I felt lost, and my mental health suffered. I wanted my life to go back to the way it was before Cushing’s, but that wasn’t realistic.
Even after I had transsphenoidal surgery to remove my pituitary tumor, I had trouble adjusting to my new normal and feeling comfortable in a body that still didn’t feel like my own.
As I began my recovery, it became important for me to find ways to honor myself and the body that had fought so hard. I can’t pinpoint an “aha” moment when I discovered this. My mindset just gradually changed over time, thanks to personal reflection and the support of my community.
I began to think about ways I could adapt some of my old coping tools so that they’d be safe and tolerable in my current body. Physical therapy was a great resource for learning practical ways to improve my muscle strength and function.
Returning to the basics — nutrition, sleep, and hydration — early on in my recovery allowed me to reintroduce self-care into my routine. Even basic needs can be difficult to navigate with a chronic illness, but my medical team and support system helped me through it.
Setting realistic goals helped me feel more in tune with my body, and reaching out to people in my online community helped me feel less lonely, especially when I was spending a lot of time at home. Virtual mental health resources have been invaluable, and writing about my experiences has helped me process what was happening and what my future might hold.
Because my future felt so uncertain, I decided to focus on celebrating small victories. As I healed, I slowly built on my basic routine. Most importantly, I learned to limit unrealistic expectations and remind myself that physical and mental challenges are part of recovery. It’s OK not to be OK, and it’s normal to struggle with all of the changes that can accompany chronic illness.
Honoring where I’ve been and focusing on where I’m at now have enabled me to process all of the changes I’ve experienced and adapt to my new normal.
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