Patient Story

Not taking “I don’t know” as an answer

We’ve all had our own “what the health care” moments. I’m pretty sure there’s no one in the world who hasn’t had at least one. Let me tell you about one of mine, which happens to be the story that inspired me to launch #whatthehealthcare and now our What’s the Fix? conference in June.

My wife and I moved around a bit before we had kids, but once they came along we decided to settle in Connecticut. We had lots of family and friends in New York City, so it was an easy choice for us. What we didn’t know, or realize, was how prevalent Lyme disease is in the region. Unfortunately, in our beautiful, quaint, New England town of Ridgefield (there was even a Revolutionary War battle fought there) almost 1 in 4 people contracted Lyme disease.

My daughter is one of the “1s”. We found a place to get her tested for Lyme and the tests returned positive. We were thrilled to at least have a diagnosis, but Lyme is a tough one on every level. When we went to our pediatrician (a different provider had to run the test) with the results, he wasn’t sure what to do with the diagnosis.

So, what did we do? Well really, what did my wife do? She did what lots of moms do and took it upon herself to figure it all out. She jumped online, found support groups, read every article that she could, networked like crazy, found the best Lyme doctors and stalked them until we got near future appointments (they are usually booked years out), and taught herself every possible treatment that could help our daughter. She became an expert in medications, diet changes, environmental changes, Eastern medicine, and more just for the chance to help our daughter. She didn’t take “it doesn’t exist” for an answer and because of her resilience and her drive, and the relationships she built with others in the Lyme community, she’s helped our daughter recover. My daughter went from needing to be carried or pushed in a stroller at 7 years old to dancing in front of 19,000 people at Trailblazer games by age 11.

So why am I telling you all of this? Because my wife has inspired me to help fix this mess that is health care. To give people a voice in the fix, and to never take one answer, from anyone, as gospel.

Hopefully you will be able to join us for some of What’s the Fix?  You will hear a lot more stories like mine, from people who didn’t give up and didn’t take “it doesn’t exist” or “I don’t know” as an answer. But they figured it out on their own, and because they did, they not only made a difference in their own lives (or the life of someone close to them), but they have changed health care a bit for all of us.