Positive Spiritual Coping Yield Better Results
During 2007 – 2008, a pilot study was conducted by Sian Cotton and her colleagues at Sickle Cell Research and Education Day, an annual event held in Cincinnati, Ohio at the Children’s Hospital Medical Center. The team administered a survey and conducted semi-structured interviews with adolescent-aged patients regarding the impact of religion and spirituality on coping with the disease.
The study found those who relied primarily upon positive religious and spiritual coping strategies—such as seeking out a stronger connection with God or a Higher Power—found more effective comfort and relief than those who used negative strategies—such as asking what they had done to cause God to punish them. It is quite interesting that most adolescents who took part in the study reported using a collaborative religion and spirituality coping style to pray for relief from symptoms as opposed to using a self-directed coping style, in which they would rely only on themselves for pain management and comfort.
When and How do we Find True Faith?
In reading these results of the study, I couldn’t help but wonder… At what age do we truly learn how to have faith and how does it come about? Some grow up surrounded by religion, introduced to God—or another word associated with a higher power—at an early age. Some attend church and are connected to other believers of the same higher power through connection to their community. Is this true faith, though?
The fact that we are brought up in a particular religion, does not answer the question: When exactly do we meet God? Just because we are told something repeatedly does not necessarily yield true belief in the power of that being or force.
Throughout human history, as time passed and cultures expanded, many different names and meanings have developed in an attempt to answer the question, “Who created us?” Depending on our belief system, we may say God, Elohim, Allah, Yahweh, Spirt, Source, the Universe, Nature, and the list goes on. The connection with the creator is within everyone; the truth is there is no separation between what different people call it.
Questioning Faith: Are you Praying the Right Way?
It wasn’t until new symptoms of my sickle cell disease started to appear that I began to question my own faith or existence; sometimes, pain can bring you to the point of confusion. You try as you might to achieve your goals, but something always seems to be holding you back.
When you are in pain, the automatic response—if you pray to a higher power—is to constantly ask God for what you want… relief! However, it felt as if God was only pushing me farther away from what I asked for. Some may blame this on interference by the devil, for even Jesus was tempted by the devil.
My personal sickle crisis usually develops after strenuous activities. I am forced to spend long work hours sitting down, causing hip pain, but avoiding standing up too long, which can lead to chest pain. Maybe it is different for others. If your work requires more movement, and you may experience knee pain instead. No one’s pain is the same. Just as no one’s spirituality is entirely the same, despite how we may have been raised. I began to question my own higher power—why was I still in so much pain even after extensive prayer? Was I doing something wrong? Was my faith inherently wrong?
Sickle Cell Challenges
Sickle cell is a progressive disease; each crisis stacks up on top of the last. By the time those who face sickle cell reach adulthood, they already carry heavy stacks on their shoulders. It is an extreme weight to bear, and one you are never allowed to put down for a rest. In a sense, it is like a game of Jenga. When you are playing Jenga and the tower falls, you’re now a prisoner to picking up each block, only to carry that stack on your shoulders once again in the next round.
I find advocating for sickle cell is important because there is still so much lacking in the treatment, research, and understanding of the disease and its patients’ individual experiences. We often see and hear positive news about sickle cell advances in the media; however, the numbers don’t always generate positivity among those facing it and experiencing it day-in and day-out.
Sickle Cell Triggers are Different for Everyone—and Change Over Time
Personally, these days, after a sickle cell advocacy event I always seem to develop a sickle cell crisis. It causes me to look back and recall and reflect upon our annual trip to Six Flags at the end of the year during my elementary school years. I always had so much fun, but it also generally resulted in an annual trip to the Emergency Room for me. Year after year, I never learned! However, aging with sickle cell can lead to dramatic shifts in the things that excite you. Now, it isn’t an amusement park that does it.
Instead, I find thrill and delight when I am provided the opportunity to share my opinions with health care providers about how they can provide a better quality of life to sickle cell patients. I always think, “Oh, just think about how much these health care providers are going to learn today!” There are so many different health platforms and organizations that are eager to learn how they can better manage sickle cell care and ease their patients’ symptoms. They appreciate my input, and I appreciate being asked for it. It gives me a sense of purpose, and it offers them the opportunity to be better caregivers and doctors.
Preparing for, attending, and providing feedback at these events sometimes involves long hours, overtime, and a significant extra workload, but you tell yourself it’s worth it. A couple of years ago, after an advocacy event, I went through a crisis—as expected. Which brought me back to prayer… I noticed that I always asked God to provide relief after I was in pain. I had always asked God for mercy or relief as a request… until one day I didn’t. Instead, I said, “thank you.”
Gratitude and Sickle Cell: Discovering a New Way to Pray
This one time, I merely expressed gratitude. I didn’t ask for anything. Despite my pain, my disease, and my suffering, I was excited that I had been provided the opportunity to advocate at this event—and I told God I was grateful for that. Surprisingly, my pain began to dissipate. It was the first time my sickle cell pain had ever cleared up that fast!
I questioned whether I had been praying wrong for all these years? Does gratitude truly relieve sickle cell pain? I simply thanked God for allowing me to have the experience and to share my thoughts with others. I thanked God for allowing me to shed light on something that matters and that I have valuable input on based on my own experience. I was utterly shocked that my pain had disappeared so quickly! The next morning I looked in the mirror, ready to leave for work, and I asked myself, “Who am I?” I felt like a new person. I could see myself for what I was—and I was appreciative.
Using Gratitude to Find the Good in Sickle Cell
I used to think sickle cell was all bad—almost like a curse. Feeling this way—on top of the sickle cell symptoms—would take me to the darkest of places. However, it was then, after I acknowledged the power of gratitude, that I realized darkness isn’t always bad. I was the one who had decided it was bad… but darkness is merely the unseen, the unknown, the chaos, and a reflection of ourselves that we are either afraid of or don’t want to see. If we look at the reflection, we may be surprised by who we are and what we are capable of.
Somewhere along this journey, after I learned to use gratitude, I realized that if I could just find some good in sickle cell, then I could appreciate even the darkest times for something. Because of this realization, I’ve come to a deeper understanding of sickle cell crisis pain. If each warrior has a subjective experience, then our pain crises are subjective as well, yet because they live in our body it is more convenient for us to associate them as one. I am not saying my ability to be grateful provided a healing miracle by any means. I continued to have symptoms that required periodic hospitalization, but I also had some crises that were healed with prayer. I understand it as balance, and proof that my sickle senses were emerging and growing stronger.
