Afraid it’s Cushing’s but somehow even more afraid that it isn’t
I've been reading posts in this community for the past few weeks, ever since I started wondering whether I might have Cushing's myself. Although "worrying" might actually be the wrong word. In a strange way, having an explanation for all the physical changes I've gone through would almost feel like a relief.
A little background about me:
At the beginning of 2025, I had a cryptogenic stroke, meaning doctors were never able to determine what caused it. Thankfully, the only permanent damage was the loss of part of my visual field.
Adjusting to that new reality took quite some time, and at the same time I was determined not to fall behind in law school. Because of everything that was going on, I think it took me longer than it otherwise would have to really notice some of the other changes happening to my body. Looking back, I honestly can't say exactly when some of them started.
But one day in March this year, I looked in the mirror and barely recognized myself.
I had gained around 15 kg (about 33 lbs), mostly around my stomach and chest. My lower abdomen was covered in thick red stretch marks, and I had developed this soft mound of fat at the back of my neck. My face looked extremely swollen, especially in photos, and no matter what skincare routine I tried, I couldn't get rid of the acne. I was incredibly ashamed of how I looked.
I blamed everything on bad genetics, not exercising enough, and the stress of months of studying. Even after I started paying much more attention to my diet, I barely lost any weight. Eventually, I tried not to let it get to me and simply accepted — or maybe ignored — the changes for the time being.
A few months ago, I went to my GP for a routine appointment. During the appointment, she suddenly asked me whether I was taking any medication containing corticosteroids. I was confused and told her no.
She explained that she had noticed that my face looked significantly more swollen than the last time she'd seen me and that it had developed an almost "moon face" appearance. She had also noticed how rapidly I had gained weight.
I just sat there listening, feeling increasingly ashamed of my own body. At that point, I fully expected a lecture about being overweight and how, especially given my history with a stroke, I really needed to do something about it.
Instead, she referred me to an endocrinologist. She basically told me that I was already a bit of an unusual medical case and that, because of my history, it made sense to be more cautious and investigate things properly. I left with the referral without really understanding why I needed to see a specialist.
At the time, I didn't realize that my doctor had been thinking about Cushing's. It was actually a friend who later mentioned it to me, which led me to read about the condition.
And suddenly, all these seemingly unrelated little symptoms seemed like they could have one common explanation.
A few weeks ago, I finally saw the endocrinologist. After examining me and looking at the symptoms I showed him, he described them as almost "textbook" signs and ordered an overnight dexamethasone suppression test. I still don't have the results.
So that's the background.
The actual reason I'm writing this, though, is because I feel like an impostor.
In some ways, Cushing's would almost feel like the best possible outcome at this point — not because I want to be sick, obviously, but because it would finally give me an explanation. And because, unlike so many other possibilities, there is at least a clear path toward treatment.
Maybe I would also stop blaming myself quite so much for what has happened to my body.
But the uncertainty right now is exhausting.
My family regularly tells me that I should just go on a diet and exercise more. That I should "do something" so I can look better again. And because Cushing's is such a rare condition, I keep questioning myself and wondering whether I'm somehow imagining connections that aren't really there. Part of me feels almost guilty for hoping the tests find something.
Has anyone here experienced something similar while waiting for a diagnosis?
I'm scared that it won't turn out to be Cushing's and that I'll end up right back where I started — questioning myself and wondering whether all of this really is somehow my own fault. At the same time, I keep thinking about cyclical Cushing's and how incredibly difficult it can be to detect.
I know what it's like to search endlessly for answers to symptoms or medical problems and never actually find them. I already went through that after having a stroke at just 26, when despite all the testing, no one was ever able to tell me why it happened.