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How Getting Sick Taught Me to Stand Up for Myself

But the path to diagnosis wasn't simple or straightforward. In fact, it was difficult and, at a time, felt hopeless. It also taught me valuable lessons.
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I felt like my life was shrinking.

I was losing my ability to live an active life because I was exhausted. Not the garden-variety "I'll take a nap and feel better in an hour" kind of tired. This was a tired I couldn't escape no matter how much rest I got. I stopped participating in activities I enjoyed because I didn't have the energy. I was dragging. And I was incredibly frustrated because I wanted to be out hiking or kayaking or having fun with my friends.

I couldn't avoid the fact that I was approaching age 50, and I wondered, is this what "getting old" feels like? While someone in mid-life may not have the stamina they once had a few decades ago, what I was experiencing seemed too extreme to be normal. I made an appointment for a physical.

Little did I know the journey ahead of me.

A perceptive nurse noticed something in my bloodwork that was off. It was enough for her to refer me for more tests which put in motion a series of events that led to a diagnosis of parathyroid disease.

But the path to diagnosis wasn't simple or straightforward. In fact, it was difficult and, at a time, felt hopeless. It also taught me valuable lessons.

It began with specialists who sent me for a slew of tests including scans, xrays, ultrasounds, urine and more bloodwork. Meanwhile, I was also doing my own research online and I became convinced that parathyroid disease fit my symptoms perfectly. But the specialists disagreed. They all told me to wait and come back in a few months for another consultation.

I was devastated.

I couldn't believe they had nothing to offer me. I felt so discouraged, I cried in one doctor's office as I pleaded my case. I could not imagine going for another six months feeling like I did, with the likelihood that it would get worse with the passing of those months.

Out of desperation, I went back to my research which led me to a doctor in another state who specializes in parathyroid disease. He confirmed my diagnosis and, a few weeks later, performed the surgery that cured it.

Cured it! These two words fill me with gratitude and joy: joy from relief of the debilitating symptoms and gratitude for the nurse who started the process, the doctor who cured it and especially for the three life-changing lessons I learned.

Experts aren't always experts

All my life, until this point, doctors were authority figures. They were People With All The Answers. What I learned from this experience is that they are human, and sometimes they don't have the answer.

By moving experts off a pedestal of infallibility, I became my own advocate. I researched my symptoms, asked questions when what I was told didn't match what I had learned, and did not take no for an answer when it wasn't the right answer.

Even though I felt wobbly and unsure of myself, I knew I needed to take responsibility for my own wellbeing.

Trust what your body is telling you

My body was telling me that something was wrong. I knew deeply that the fatigue and aches I was experiencing were not simply middle-age and wouldn't go away on their own. I knew that the clue the nurse found in my blood work was not to be ignored or explained away. I knew that something more needed to be done. I knew I couldn't wait for months until something worse happened for specialists to take me seriously.

My body was my motivation.

Don't give up

When I went back to my research, I contacted the doctor I found through the Internet. This felt like a big step because every time I looked at his website and thought "Hey, this sounds like me!" a critical voice in my head said, "when does 'I diagnosed myself from information on the internet' sound responsible?" But, with my mission to be my own strongest advocate and with trust that my body was telling me it needed help now, I reached out to the doctor.

It was the best decision I made because in a few weeks I was cured.

As I look back on this experience, I see how vulnerable I felt to be ill and how heartbreaking it was be turned away by professionals. It was frustrating and scary to feel like they were consigning me to an ever-shrinking life. But the experience showed me where to grow, and the lessons I learned continue to serve me well in my health as well as my life.