By Kelly, Illinois
When I was 12 years old, I started experiencing unexplained weight gain, fatigue, irregular sleep patterns, brain fog, and sudden bouts of rage that felt unlike me. For years, I was told everything was normal.
Deep down, I knew something wasn’t right. For nearly 20 years, my labs would come back “normal,” and every time they did, I questioned myself a little more. I kept wondering if I was overreacting, or not explaining things right, or just missing something.
Behind closed doors, I cried a lot. I can’t count how many times I left doctors’ offices completely sobbing, feeling broken, and wondering how my pain could be so invisible to the people who were supposed to help me.
One endocrinologist looked me in the eyes and dismissed me just because I didn’t have purple stretch marks. Another handed me the number to a weight clinic. Another told me to see a therapist. I remember leaving those appointments crying, feeling like no one was actually listening to me or taking what I was saying seriously.
Living with Cyclic Cushing’s is unpredictable. My cortisol levels switch on and off, so symptoms come and go. One of the hardest parts is that it’s tested the same way as non-cyclic Cushing’s, even though it doesn’t always show up the same way. A normal test can miss it completely, and that makes getting answers so much harder.
That was one of the hardest parts: trying to explain something I knew was real and still not being believed.
I continued questioning myself a lot, even though deep down I knew my body wasn’t right. It felt like I was being measured against checklists that didn’t fit me. Not everyone with Cyclic Cushing’s looks the same, and normal labs don’t always show the full picture. I left those appointments feeling gaslit and alone. I cried after a lot of them.
What helped me keep going was finding online support groups for Cushing’s. After years of feeling like no one understood me, I finally found people who did. For the first time, I didn’t feel alone in my experience.
Seven. That’s how many endocrinologists I saw before I found one who really listened. Most of them told me I didn’t fit what they expected to see. But after a while, something in me changed. I stopped staying quiet. I started speaking up. I started trusting what I knew about my own body.
If I had stopped at doctor number three, five, or six, I never would have gotten answers. I kept going until I found doctor number eight, the one who finally worked with me, looked past the checklist, and kept going even when tests came back normal.
Finding the right doctor changed everything for me, but it also gave me purpose. Going through this for 20 years changed me. It made me want to speak up so someone else doesn’t feel as alone as I did.
Now I just want to be honest about what Cyclic Cushing’s looks like. Normal test results don’t always mean nothing is wrong. Sometimes, they just don’t catch it.
If you’re going through this, or something like it, I just want to say: Don’t stay quiet. Don’t give up just because someone doesn’t see it yet. You know your body. You deserve answers.
