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Sunday, March 24, 2013

Advocating for yourself with complex, chronic illness PART 1

My 30-year career as an RN included a passion for patient advocacy.  People that are acutely or chronically ill are vulnerable and deserve to be treated with dignity and respect.  Vulnerable people need supportive and trustworthy people on their healthcare team, and the patient serves as the captain of that team.  My personal experience as a patient suffering from a complex and poorly understood illness hasn't always been a pleasant one with regards to my healthcare team.  I know that others have had similar experiences.

Any illness is a very personal experience that is unique to that person.  As a healthcare professional it is a privilege to be a part of that experience and to be a member of that person's healthcare team.  Unfortunately patients don't always feel as though they are the captain of their team.  In fact, many times patients feel more like outsiders and as though they are an annoyance when interacting with health professionals.  It is those times when we feel most isolated and alone, especially if we have been discounted and prescribed treatments that provide little symptomatic relief, but lots of side effects.  Feeling alone and unsupported emotionally at a time when we are so vulnerable is a difficult place to be.  That leads to a myriad of emotions including anger, depression, anxiety, fear, frustration and more.  We desperately need an advocate to help us navigate a complex and sometimes seemingly hostile healthcare system that will only continue to become more and more complex.  The complexity increases even more when the patient has a poorly understood illness that presents with a long list of confusing symptoms and reliable diagnostic tests don't exist.  On top of all that our family members and friends have difficulty understanding how desperately ill we are because "we don't look sick".  That only adds to our feelings of isolation.

There are advocacy groups in the Fibromyalgia and chronic illness communities, but those groups work in the background on our behalf and cannot be there for us when we need them most.  What we need is our own personal advocate to stand by our side when the going gets tough and to direct a healthcare team that may be apathetic at best.  So where is that advocate?  That advocate lies within each of us.  We must arm ourselves with knowledge of how the healthcare system works and how to find a medical provider that will serve as a co-captain in our diagnosis, treatment and care.  That's a tough charge when we feel so sick and are in so much pain, but as healthcare consumers we have a lot of power -- knowledge and camaraderie are power.


This blog post is the first of a series designed to help you become an effective self-advocate.  Becoming your own self-advocate will empower you to build and lead a more productive healthcare team.  The goals of this series are:
  • to build a solid foundation for your healthcare team.
  • to establish common language and definitions.
  • to identify dysfunction in your healthcare team.
  • to list effective methods of managing dysfunction in your healthcare team.
  • to describe methods that maximize your doctor visit.
  • to list tools available to manage conflict and issues that are unresolvable.

 My personal goal is to help you become your own best advocate in your quest for wellness.  I would like to serve as your virtual patient advocate.  Questions and dialogue are welcome as well as respectful criticism.  There is no time in the history of healthcare when patients have been more in charge of their healthcare as the present.  As healthcare consumers with powerful tools at our fingertips, we have the ability to change the way healthcare is provided so we are able to maximize our healthcare dollars and have better wellness outcomes.  Our time is now so let's embrace it and empower ourselves to be the captain of our healthcare team.  Blessings to you in your quest for wellness!
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