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Stand Up for Your Rights

By Krista Kellogg

For many, staring down the barrel of chronic disease for the first time is deeply frightening. It’s not easy when you realize that “chronic” really means “forever.” There is an evolution of emotion that takes place when you face this most personal of betrayals, that of your own body against itself. You feel broken, spoiled, like damaged goods with no return policy. In many ways, you go through the five stages of grief: denial, anger, bargaining, depression and acceptance. I meet hundreds of psoriasis and psoriatic arthritis patients like me, working their way through the process, through the pain, through the embarrassment, through the disappointment of failed treatments. The waves of disease can be unrelenting and unforgiving, wearing down your resolve and wellbeing. It takes great effort, preparation and maintenance to steel yourself against the ever coming tide of aches, flakes and cracks.

One of the most critically important aspects of proper disease management is finding and establishing a healthy relationship with your physician or physician assistant (“PA”). Time and time again, I hear from people who are struggling with their psoriasis and one of the most common themes of the struggle is a frustrating or dissatisfied relationship with their dermatologist or rheumatologist. In my experience, not until you identify a physician or PA who is both qualified and committed can you begin to move through the phases of the chronic disease journey to full-blown acceptance.

When you have a chronic disease, a long-term patient-doctor relationship that is built on mutual respect, open communication, trust and compliance is fundamental. The other half of the equation is a commitment to yourself — a commitment (and the confidence) to ask for what you need, to demand the best and most comprehensive care, and muster the courage to move on if you are dissatisfied.

As with many chronic diseases like psoriasis and psoriatic arthritis, there are a host of ancillary health considerations that come with the territory.  These can range from psycho-social and self-esteem issues to associated diseases like heart disease and obesity. Because of these inherent complexities, it is our responsibility to seek the best and most thorough approach to treatment. Because of these complexities, it is also easy to become overwhelmed and confused.

One way to combat the confusion and find a healthcare provider who is also a partner is to know your rights as a patient. The National Psoriasis Foundation has published a “Patient Bill of Rights” that is an excellent affirmation of such rights.  While it addresses the psoriasis patient, it translates easily to other chronic conditions and is a reminder to all of us to take our health and overall wellbeing seriously and to demand that our healthcare providers do the same.

Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis.  She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.

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