As patients born with Sickle Cell Disease, we belong to a committed multi-generational community of individuals who for years have fought to change the healthcare system while simultaneously battling a difficult and deadly disease.As a result, patients owe the prior generation of patients and caregivers who have invested countless hours in the difficult and ongoing work of advocating for better care.
Their work has fought for increases in Federal funding that has improved the research and development of pharmaceuticals and therapeutics that have improved the delivery of Sickle Cell Disease patient care and has improved the quality of our lives and prolonged our lives.
As patients, we must learn the three ways to become a strong advocate for ourselves and our families by fully accepting and embracing the reality of the disease that causes pain, disruption and threatens every possibility of living a normal life.
For patients, the idea of fully embracing our disease is easier said than done. Because many SCD patients feel overwhelmed, helpless and convince ourselves that our actions attitudes and behaviors have little if any positive influence on our ability to manage or change the trajectory of our health and wellbeing.
Because of the feelings of helplessness many patients have been known to (at some point and time in their young lives) embrace reckless actions, attitudes and behaviors in an attempt to experience something that resembles normalcy.
But, the first step of self-advocacy requires patients to consistently act on behalf of their best and most personal interest. Especially since we are usually totally reliant on the help of others when we are experiencing crisis pain.
Feelings of overwhelming guilt should not inspire us to act responsibly. Instead, our behaviors should fully acknowledge the difficult work caretakers provide us in our moments of venerability and need.
I remember the guilt, consternation and conflicting emotions as I attempted to manage the dueling interests of trying to fully experience adolescent and young adult life and not wanting to appear ungrateful for the care I received from my parents.
Especially since we both knew any SCD patient can and often will experienced crisis pain while behaving rationally and acting responsibly.
The second important element of becoming a strong advocate for yourself and your family is accepting the reality that patients also have the responsibility for providing care for others in their time of need. And, we can not provide care for others if we are not taking care of ourselves.
As a patient and a person, I have always wanted to be available to help others when needed and be an equally important member of my birth family and my relationship married family.
Because a healthy family relies on each member to actively participate in the happiness and health and wellbeing of each other.
The third element of becoming a strong advocate for yourself and your family is realizing and accepting a role in shaping and influencing the outcomes of the patients that will follow you.
Because there is no greater gift to yourself, your family and your community than becoming an advocate for SCD patients and families you may never meet.
Patients, families and caregivers around the country and the world have common experiences that develop universal bonds of understanding that requires (if not) inspires us to act in ways that may improve upon the experiences we have learned from and have endured.
And, if given the opportunity we should do all we can to improve the experiences of the next generations of Sickle Cell Disease patients.
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