Surviving the mental turbulence of Cushing’s disease with therapy

I’ve been a social worker since 2018. Throughout this journey, I’ve found that working with a therapist was imperative for me. The social work field is both turbulent and relentless at times, and therapy helped me prevent burnout in both my personal and professional life. Yet I don’t think I realized just how helpful therapy would be until I got sick.

I utilized many modes of support to help me get through my Cushing’s disease journey, including talking with friends, family, and members of my Cushing’s support group, and petting other people’s dogs. Yes, it’s true — I need to get my own dog. But for now, I live vicariously through other people’s pets.

Joking aside, I was not afraid to get professional help as well.

Therapeutic support apart from family and friends

With therapy, I have been able to talk about everything associated with Cushing’s disease. This includes the diagnostic process, symptoms I was experiencing, finding experts in treating the disease, and everything in between.

I remember the first time I brought up the idea of Cushing’s disease to my therapist. She approached the subject with the utmost kindness, support, and curiosity — and without judgment. My therapist went above and beyond, conducting her own research on Cushing’s. She wanted to know how to appropriately support me.

Additionally, she asked for updates every session, and we talked about what each step of the process would look like, from simple testing to the inferior petrosal sinus sampling procedure to transsphenoidal brain surgery to remove a pituitary tumor.

We also talked about how this disease affected my mental health. With a diagnosis of cyclic Cushing’s disease, I encountered periods of both high and low cortisol levels. In addition to having harsh physical symptoms, having both high and low cortisol levels also causes difficult mental health symptoms.

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Cortisol and mental health

While consistently high cortisol levels are often associated with depression, in my case, it seemed that high cortisol levels would trigger anxiety, while low cortisol levels would prompt depressive symptoms. The anxiety felt like the worst part of it all. I would become worried over the slightest things. My head felt like it was in a panic-induced fog. At times, I wasn’t even sure what I was scared of.

I could actually feel my body shift from low to high cortisol and back again. Sometimes this happened over a few hours, while other times it happened over a few days. I could figure out when I had high or low cortisol levels by observing both the physical and the mental symptoms.

Having a space where I could bring these symptoms up for discussion allowed me to process them and better understand how they affected my life, as well as how to cope with them. This was key to improving my quality of life, not only during testing, but also during surgery and afterward.

Cushing’s disease has so many unknowns, ups and downs, and twists and turns. What I’ve learned is that having a solid support system is crucial to getting through it all. It will never be easy, but it can feel less heavy when you are able to lean on others for support.

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.