In Search of Specialists: Finding Healthcare Providers for Rare or Complex Conditions

Tips and tricks I've used to navigate healthcare with complicated chronic health issues

A common question that I am asked is “How do I find a doctor who will evaluate me for ‘xyz’?” or “What doctor should I see to help manage my symptoms?” I wish I could provide an easy, straightforward answer to this question every time. For a lot of conditions within the rare or complex disease space, there aren’t straightforward answers. Sometimes, even finding a doctor who has heard of your condition is hard enough, let alone one who has all the answers to help you.

On a personal note, I’ve traveled extensively for care, have had great and some not-so-great experiences, and have had multiple challenging diagnoses and complicated procedures and surgeries. Finding the doctors to address these issues hasn’t been easy. I’ve found a combination of different tools and resources to be the best way to get help, even when it seems like all hope is lost. In this blog, I’m sharing strategies, tools, and cautionary advice based largely on my personal experiences (there really isn’t a “science” to figuring this out)!