u/new-machine

I know recurrences are a possibility - not a guarantee. I know that we may be disproportionately hearing about recurrences compared to those who have had successful surgeries and have moved on from Cushing's forums. With that said, I'm still scared. As someone who will be facing pituitary surgery at some indefinite point in the future, I'd like to hear some success stories.

ed:cw, abuse:cw

I escaped from a lifelong, severely abusive environment in my early 20s, and shortly after I started living on my own, my Cushing's symptoms appeared. I've been in ongoing recovery from CPTSD, anorexia nervosa, and trauma specifically from my eating disorder since around that time.

Instead of being able to completely focus that time and energy on the trauma that shaped my life from birth, I was now having to explore newfound and ever-developing trauma from being forced to live in a body that wasn't mine; dealing with symptoms I had never had any history with before; managing brain fog and heightened anxiety; working on stabilizing my blood sugar without engaging in disordered behaviors; being dismissed by doctors and having to knock on multiple doors just to be heard; and more.

It was like my nervous system didn't let me realize just how traumatizing this whole experience has been for me until I finally received my diagnosis. I thought I'd cry tears of joy. All I wanted to do was sleep for a year straight. And when I didn't feel drained, I started to worry that the diagnosis wasn't "real" - like that part of the fight still wasn't over, that another practitioner could debate the validity of the diagnosis and take it all away. (I also don't have the green light to get surgery right now, so I'm not through it yet.) The hypervigilance, and the exhaustion, are trauma responses.

I know that not everyone has access to clinical trauma-informed support. (I couldn't get it for years prior, and finally got lucky.) But whatever you can do for yourself, take care of your mind as well as your body. Regardless of your background, your nervous system might not let you see how traumatizing this experience - recognizing and managing symptoms, testing, getting diagnosed, moving on to treatment, and recovery - can be, until it feels safe enough to begin processing it all. Familiarize yourself with how trauma can both manifest and hide. Trauma doesn't always feel like trauma, sometimes by design - sometimes as a function of keeping you safe until you can process it.