Guest post by Rocky Walker, Chaplain Resident
As a clinically trained chaplain assigned to address the spiritual and emotional needs of every Sickle Cell Disease (SCD) patient admitted to Mount Sinai Hospital, I have found that this ministry has exponentially increased my awareness about SCD. This assignment has educated, exposed, challenged, and blessed me. All of that has given me new understanding, great appreciation, and immense respect for what SCD patients and their families often endure.
One of my main discoveries is the difference increased between pain vs. suffering. The PAIN of SCD is a direct result of oxygen being severely limited to certain organs by “sickled” cells. But the SUFFERING of SCD is their emotional response to that pain, and other dynamics of their overall patient experience. Responses include shame, fear, and guilt, to name a few. As a chaplain visiting many patients in the middle of their crises, I have been amazed by the emotional attributes they routinely exhibit, e.g., their level of strength, endurance, resilience, courage and faith. In providing spiritual and emotional care for them, I find that I often leave the hospital room feeling as though “they have just ministered to my heart, instead of it being the other way around.”
In my role on the Interdisciplinary Team, I focus on the suffering of my patients more than I do their pain. I have learned that the average patient with SCD suffering is unique and extensive. However, I have also learned that they tend to mature much faster than other patient populations, and they develop incredible coping skills that enable them to manage their extreme pain and sometimes immeasurable suffering. Until the medical community develops a cure for SCD, their pain is unavoidable. However, their suffering can be avoided with emotional support from family and care providers. I believe that the amazing attributes embodied by most people suffering from this disease works both for them and against them. It works for them by helping them to survive one of the most painful physical conditions any human will experience. It works against them because those same coping skills often “mask” their pain and suffering by under self-reporting, and this lends to their condition being misunderstood and sometimes under-treated.
I am so thankful that the entire SCD team here at Mount Sinai works so diligently to address the pain and suffering of this group of patients and their families. Last month, a mother of a patient fresh off of a traumatic suffering experience in another hospital erupted into tears when I simply introduced myself. I was there to visit her daughter in the Emergency Room. She said, “She had never had a hospital care enough to have a Chaplain visit her daughter in the ED.”
My hope is that awareness of the pain and suffering of patients diagnosed with SCD will increase in our city and in our society. My prayer is that what we are doing here at The Mount Sinai Hospital for SC Awareness Month will spark a conversation that will lead to a “year-round” discussion that better informs everyone about SCD, its patients, and their experiences.