Given my history, the lessons of acquiring anything as hard as health care have been hard to learn–but also hard to explain and often hard to do when it comes to fixing problems.

Part of my journey has been sharing my experiences–no matter how hard it might be to understand–with others. To inform them of what I’ve learned and, sometimes, how to avoid making the same mistakes I made.

When I didn’t know what I was talking about when explaining how health care would work

For most of my time in California, I had a heavily employer-based health care plan. Because of health complications, I was unable to continue the plan as needed and had no access to private insurance and saw doctors other than Stanford. A few years ago, I saw a doctor with Kaiser and the rest of the journey of seeing health care better started.

My journey began before I even had insurance with Kaiser. As a five-year old, I was diagnosed with a neurologic condition that was completely unknown to my family and doctors until the diagnosis was confirmed when I was about 12. Little did I know at the time, but this is the age when you start out as an “inferiority complex.” This in addition to many more disabilities ultimately made them worse and slowed down my ability to learn about and understand health care.

When I saw my first doctor out of Stanford, I was not prepared to be in his seat and wear a health care badge–but he treated me like I belonged and I too felt included and comfortable. He was accepting and patient–and we spent hours talking about his journey, my struggles, and the differences between the two.

Even though he was constantly on call, the way we communicated helped me feel that I was in the driver’s seat of my own care and I enjoyed discussing his ups and downs, his successes and his failures.

“Success” in this context meant getting diagnoses and treatment that worked for me and helping me find good doctors and quickly getting scheduled to see them–which helped me make the world of health care more manageable.

There are the skills and principles needed to understand and negotiate the health care system

Because of this focus, health care made me see less about “What problems are being solved?” and more about who’s helping me when I start to feel overwhelmed or in pain. It helped me see that those with knowledge about me or my health weren’t the only solution, but instead just one. They are able to act on my behalf to help me understand what’s being asked of me or found helpful–but that someone else needs to help me understand what to do.

Some doctors help you understand what needs to be done in your treatment. Others focus on addressing your needs directly or trying to help you learn what it is you need–often with no control over how to make something better for me. Learning when someone is focused on helping and helping me help myself was critical to my knowledge and my ability to identify trusted people in the health care system.

I continue to follow these as I attempt to navigate the health care landscape and learn from the mistakes of others.