I’m trying to be more honest about how medical trauma affects me

“It’s completely fine! No big deal,” I find myself muttering again and again as people ask how I’m doing. I laugh off how serious my situation is, quickly changing the subject. But then, at home, I end up staring at the wall and crying myself to sleep.

As someone with Cushing’s disease and disabilities, I always worry that I’ll be perceived as weak. I swallow my pain and brush over trauma so that people know I’m strong. I’m constantly told that I’m resilient and incredibly positive, and that people are amazed by that. And I am resilient and positive, but that doesn’t mean I’m unaffected.

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My diagnosis journey

I was diagnosed with Cushing’s disease in March 2020 and underwent pituitary tumor removal surgery in June of that year. Because it was the height of the COVID-19 pandemic, and my surgery took place in another state, I had zero visitors during my recovery in the intensive care unit, where I had to stay to avoid infection.

It took me a long time to recover, but just as I was finally starting to feel better a year and a half later, I got sick all over again and was diagnosed with a Cushing’s recurrence.

My initial diagnosis took two years and several specialists. I’ve had what feels like a thousand MRIs. At times, I have needed a wheelchair or a cane to get around, and I’ve experienced such excruciating pain that I couldn’t move without screaming out in agony.

And now, after the traumatic birth of my daughter at 27 weeks, which involved a placental abruption and preterm premature rupture of membranes, I’m starting to get worn down. Usually, when people ask me how I’m doing, I flash a smile, shrug it off, and change the subject. This response is ingrained in me, but it doesn’t represent the truth.

Panic takes over

My doctor recently told me that he wanted to perform some tests to see if my hormone levels have changed since I stopped taking my Cushing’s medications while pregnant. And for a moment, I panicked. Even though he’s the doctor who diagnosed me, I worried that the results might somehow invalidate my diagnosis.

Every time a neurosurgeon reviews my MRI scans, which is a few times a year, I spend days trying to distract myself from flashbacks to the pain, fear, muscle aches, and loneliness I faced years ago. I freeze.

Now, I’m panicking about my daughter, too. Every time her monitor beeps, my heart seems to stop, and I stare at it, begging the numbers to stabilize. In the thick of the postpartum period, I even managed to convince myself that if I wasn’t looking, her levels wouldn’t improve, and it would be all my fault.

I truly am strong, as is my daughter. But that doesn’t take away from the fact that I’ve experienced more medical trauma in the past five years than many do in a lifetime. Nobody can be strong all the time, and I’m working hard to be more honest about how I feel.

So the next time a friend asks how I’m doing, I plan to tell them the truth: I’m having a hard time. I’m undergoing testing, and that makes me anxious. The postpartum period is challenging. I’m grateful for my daughter and love her more than I ever thought I could, but I wish I’d been able to carry her longer. I’m starving, and pumping is difficult. I wish I didn’t need another MRI. But I’m also proud of myself. I’m proud of my baby. And it’s OK to not be OK.

You can also follow my journey on TikTok and YouTube.

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.