About the Patient Advocate's Chronicle

Why is it important to be your own advocate?

We no longer live in the golden age when doctors are gods and we can trust them to know what’s best. Even if we did, there is too much at stake for chronic patients to leave everything in the hands of the professionals. You can see your specialist periodically, and he or she can advise you, but they will never have the whole picture unless you fill in the blanks.

Treat your condition as if it is a business. You are the CEO, and your medical team is the Board of Directors. You report to them, and they are there to oversee and advise you on the areas that are their specialties. Together with your team, you will work to achieve the life you want.

Realistically, you probably don’t want to have to deal with every type of provider recommended to you, and you can probably do without one or two of them. But as with any business, if you remove the CEO the operation will cease to function properly. There is no direction, and no leader who will set priorities.

The direction of your condition should be based on your wants, your goals, and no one else’s. The only way to do that is to be an active participant.

It took me decades and a lot of help from a lot of people to get to where I am today. It’s still not a straight line to where I want to go, but it’s smoother than it was when I started. 


I struggled with this -- to put the mission into a statement. It's more about your feelings. No matter how much experience you have, there are still things about insurance that can take us from zero to furious in seconds, and we all still feel anxious until the doctor tells us that our test results are good. I have what I need to deal with things like that: support, access, and knowledge. 

I am starting this resource to help you ease the feelings that accompany scary conditions -- confusion and, if not fear, definitely frustration and anxiety -- and give you the tools to gain the clarity and knowledge you need to become your own advocate. The more information you have, the easier it will be to navigate our healthcare system for yourself. To learn to live.

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