7 Things the Doctor Who Diagnosed Me Should've Told Me

Dear Doctor,

You likely don’t remember the day you diagnosed me with a rare disorder.

But I do.

You arrived out of nowhere next to my hospital bed to carefully deliver my diagnosis. When you started speaking, I felt relief for a moment. Finally, after many months of unexplained symptoms, I had an explanation. You identified what was happening inside my body. You provided an answer for my pain that so many other doctors had failed to come up with.

But then you shared additional information about the disease.

You explained it was a genetic and chronic illness. It wasn’t going away. You told me the medical science of this disease was very poorly understood, even internationally, so treatment options were virtually nonexistent. No cure existed and likely would never exist in my lifetime. Not much more was known about this disorder other than what you had just shared during our five-minute conversation.

Even though your words were even and chosen with special care, I sunk further into my hospital bed with each one of them. I felt both my quality and quantity of life disappear in the blink of an eye.

Then you slid out of my hospital room just as quickly as you had arrived, leaving me all alone. The air in the room felt heavy with your words and tears slowly filled my eyes.

It’s been a couple decades since that day. And I now realize there was so much more you didn’t tell me about living with this rare disease. Here are the seven things you didn’t tell me:

1. You didn’t tell me I’d find a rare disease community. In this community, I’m not alone. It’s a community filled with physicians, nurses, allied health professionals, patient advocates, friends, supporters and many others dedicated to never giving up. Each one is committed to going far beyond obligation or expectation to help patients like me live the best quality of life possible.

2. You didn’t tell me about some amazing pharmaceutical companies. These companies are dedicated to helping individuals with rare disorders. They understand the treatment options for rare disease are incredibly limited and are on a mission to enhance research to develop new ones. I never could have imagined in just one decade I’d see the development of so many new options that have enhanced my quality of life in ways that constantly surprise me.

3. You didn’t tell me it would make me vulnerable in the best possible way. Having something so rare and facing the ignorance of others taught me how to be vulnerable. By embracing this vulnerability, it deepened my relationships in this world, and ultimately, helped me feel support in ways that I never knew were even possible before being diagnosed.

4. You didn’t tell me it is still possible to reach for my dreams. Sure, my dreams ebbed and flowed, changed shape and sometimes took a little longer than initially anticipated. But they didn’t disappear. In fact, they often are sweeter to reach because they mean so much more than I ever thought possible.

5. You didn’t tell me that it would help me find a career path I love. Living in this body and experiencing all that I have with a rare disease led me to help other patients. It fills my heart every single day. I couldn’t imagine a better way to spend my life’s work.

6. You didn’t tell me about the power of hope and determination. These two forces are key to getting through the most difficult moments. When there were times that living with this disease seemed impossible, these forces were in me. No rare disease diagnosis can take that away. In fact, a rare diagnosis can actually serve to strengthen these forces.

7. Most of all, you didn’t tell me how possible it is to live wonderfully well with this disease. So perhaps the next time you need to deliver a rare disorder diagnosis, you may also want to share just one of these items that you didn’t tell me. Perhaps a life will depend on it.

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