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.
