To date, I’ve been diagnosed with three chronic health conditions: Migraine, uterine fibroids, and, most recently, intravenous leiomyomatosis, a rare, benign type of leiomyoma that can grow outside of the uterus. My migraine diagnosis came as a relief because having that diagnosis in my medical record helped me access medications. I never even really thought of it as a chronic health condition until I was older, and at the time of my diagnosis, it was a part of life for other women in my family. It seemed natural for it to be a part of my life, too.
My fibroid diagnosis felt a bit more momentous, but, again, I didn’t really recognize it as a chronic condition. I had surgery and I assumed I was better. I knew I was at risk of a recurrence, but no one recommended monitoring. No one made a big deal about it. Once I recovered from surgery, I went on with my life, only thinking about it when I set out to start a family and knew that a C-section was in my future as a result of the past surgery. When fibroids cropped back up a couple years after having my first child, I opted for a hysterectomy so that I wouldn’t have to think about fibroids again.
My third diagnosis was different and came with a range of emotions. First, there was relief. I had waited for 3 long weeks to hear from my doctor following a major surgery and subsequent biopsy. All signs had pointed to a high stage cancer, so when my doctor shared my actual diagnosis of intravenous leiomyomatosis, I initially felt a weight lifted off of me. Against all odds, the tumor was benign.
But then my doctor began talking next steps, recommending specialists, monitoring regiments, medication options, additional surgery, and my relief dissipated. I felt overwhelmed with too much information, while at the same time feeling I didn’t have enough. I began thinking about the realities of regular doctor appointments and MRIs, and going through life always wondering if I’d need another major surgery, and always trying to stay ahead of my unpredictable condition. There was no quick fix. No pill I could take, like with migraine, and no surgery that would eliminate risk of recurrence. This was a part of me and my life would be forever impacted.
After my diagnosis, I talked with a lot of other people living with chronic conditions. Hearing their stories helped me to not only grapple with a lot of my emotions and feel less alone in the things I felt, but it also helped me to feel better prepared to come up with a plan.
It didn’t matter if I was talking with someone living with MS, kidney disease, arthritis, or endometriosis. Every person I talked with had to figure out their treatment and monitoring plans. They had to research specialists and, in many cases, seek out a support community. And they had to grapple with how their conditions would impact their lives and the lives of their families and friends.
And so, I set out to create Diagnosis Diaries, a place for people living with chronic health conditions to share their experiences with being newly diagnosed with a chronic health condition.
There’s no playbook for what to do when you’ve received a new diagnosis, but that doesn’t mean you’re alone.
Throughout this series, we’ll share real stories from real people about receiving a diagnosis for a chronic condition. Each essay will reflect that writer’s unique experience and perspective. Some pieces may resonate with you. Others may not. But we hope that all of these essays will help you see the strength in yourself, and the value of your own story.
Managing editor, Clinical