Every life has purpose. Every voice has power. I decided long ago to speak my truth. My advocacy journey has inspired me to share my experiences courageously, and to embrace all that I am. Advocacy is defined as public support for, or recommendation of, a particular cause or policy. Advocacy is designed to influence decisions that impact society and all of the people represented by it. A patient is defined as a person receiving medical treatment. Thus, deductive validity concludes that I am a patient advocate. The purpose of this week’s column is to explain why I believe there is power in accepting, embracing, and avowing my patient status.
Some people take issue with the term “patient.” Many feel that it’s a label and a title they don’t want to display. I have heard some say they just want to blend in. They don’t want to be reminded of illness. People believe that the title of patient detracts from their humanity and their ability to live a normal, judgment-free life. They want to be defined by their character and abilities, not limited by their medical status or reduced to an illness. I understand this perspective.
However, like silence, assimilating was never my option. Congenital heart disease, limited activity, medical notes accompanying me to school, doctor appointments, and open heart surgical scars were impossible to ignore. Just as difficult to disregard were the emotional and psychological distress of such an illness. It took several years, a million tears, and confronting my greatest fears to withstand that. I struggle at times with the effects of illness, but rarely is my struggle an identity crisis. I have multiple sclerosis and heart disease. They will accompany me for the duration of my life or until a cure is found. These illnesses don’t define me, yet, they are significant representatives of my composition. It has all contributed to the person I am proud to call me.
By proclaiming my patient status, I exercise power over my life, and over how I define my disease. Knowing and embracing that I am a patient entitles me to listen, respect, address, and assess my needs. It allows me to reach out and empathize with others sharing the journey. I am the nucleus of my care and my experiences are exclusive, relevant, significant, and valuable. It is not my desire to blend in. I believe I was born to be different. Diamonds are made in the rough, and it was there that I learned to shine. Chronic illness and continuous medical care made me a patient. Today, I choose to stand in that essence. Words can influence and dominate. As a patient advocate, I have the responsibility to transform, not conform. The word patient does not diminish me; it empowers me. My Story (MS) is ever present. Power to the patient.
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