How A Diagnosis Changes Shame And Struggle To Acceptance

"...My struggles continued, morphing from one issue to another. When I had conquered one aspect of this mysterious disease, I was forced to adapt to another. Sometimes this empowered me, but most times I was frustrated. I didn’t know what I had done wrong to not be able to catch a break...to have to adapt over and over again... to not have any answers..."

How a Diagnosis Changes Shame and Struggle To Acceptance

When I was five years old, my mother used to tell me that I was unique and special. I would parade around with pride, as if she had personally handed me a gift with her words. At that age, unique was intriguing and exciting- it made me different that everyone else. It was something that I had always thought that I wanted to be.

By 22, unique had taken on a completely different meaning. It was as if without even realizing, my mother had in some way predicted a future that we never expected.

Unique was no longer the cute little quirks that had made me an individual- it was all the strange occurrences and obstacles that over the past several years had folded themselves into what became a full blown medical mystery- a constant battle between the symptoms that I was still experiencing years and a lack of a true explanation. It was something that came to be, in some ways, both a blessing and a curse.

My experience had given me a profound capacity to understand the struggle of having a chronic illness and not being able to put a name to it. It was the experience that had brought me to the field of medicine after high school and had given me the gift of compassion. It had taught me how to persevere through even the most difficult times- that I could achieve my goals no matter what happened. But still, I longed desperately for answers- to be able to put a name to all of this.

Without answers, being unique was a very lonely place- living two lives under the cloak of an undiagnosed invisible illness- with a part of me that bore a striking resemblance to every other 22 woman and another part of me that suffered in silence. I feared being told it was all in my head once again, as if nearly dying once before wasn't enough validation.

I did the only thing I knew how to do. I kept my struggles to myself, and I kept going. I didn't want to carry a big sign over my head demanding special attention because I wasn't like most other people. I didn't want people to know what I had, or that there was something wrong with me, but I longed so desperately for them to understand without me having to use words. That what I said no to things, it wasn't because I didn't want to, but because I couldn't. And to doctors, that my pain was real.

No matter how much I hid it, it was still a losing game. Even with going to college full time in a highly competitive program, holding a part time job on top of that, and forcing myself to be at a full functioning level till I would collapse- the people that loved me most would suggest over and over again, that if I didn't focus on it that it would disappear. That it was once again, mind over matter.

After all these years, my own father refused to believe that when I was 15, he nearly lost me.

More and more, I found solace in the company of others with chronic illness. Many of us had continued our lives as regular everyday people, masquerading our own private battle in the office, in school, and even on the field.

Some people couldn't work through their illnesses. Others like me hid it and tried the best they could. Oftentimes, like me, they hid heart monitors and tubes tucked under uniforms and suits, and armed themselves with an entire pharmacy in a single pill bottle just to make it though a single day. In hopes that at least controlling one of the symptoms would provide even the slightest sense of normalcy to get through the day. Knowing that someday, there would be answers.

And then one day I had answers. The words were sitting in front of me after years of searching, and I had only two options. I could throw in the towel and give in to the disease, or I could keep going as I always had been. But the diagnosis was just words- and it wasn't long before I realized that what I did with them was up to me. That no matter what my future held in store for me, I would overcome it, just as I always had.

My doctor tells me that I am one of a kind- that there are probably not others out there like me. But I am at peace, now that I know what it is. It is not in my head, and it never was.

I am unique, and it is not a curse. It is what makes me beautiful.