How Do We Handle Guilt?

I would like to continue a topic which I addressed on another blog, “People Living With Sickle Cell”. A parent talked about guilt associated with the many twist and turns impacting the lives of a child with SCD. Most of us will equate the guilt with pain and suffering although there are many psycho-social issues affecting our quality of life. Understanding these issues requires constant dialogue, study and commitment by our community and should be a topic we consistently focus on.

Let me state from the outset, most families feel they receive adequate support from their families and friends and most feel other family members adequately assist them in care giving. Yet, many agree hospitalization and home care impacts all of the family. I want to discuss the guilt felt by those living with the disease and how they view the affects it has on the family.

I felt the topic was apropos because my daughter was moving to California and wanted to take her car. There was no one who could help her drive but her mother. Because of health issues I could not travel and so I needed someone to stay with me. My wife didn’t want to leave me and my daughter was reluctant to leave. As parents we have always told our children they have to live their lives and concern for me and my disease should not be a reason not to achieve or grow up. Therefore, what choice did I have but to encourage this new phase in her life?

I asked my 80 year old parents and my uncle if they would stay with me while my wife took the trek across country with my daughter. So good so far! To say the least, I had a vaso-oclusive episode (pain crisis), which put a lot of strain on my parents. The stress was whether I could handle this at home or required hospitalization. I handled this from home. That got me to thinking. What affect does guilt have on stress? Does guilt/stress percipatate crisis pain? How much guilt do we with SCD have? Are we a drag on our family? Do we seek the additional medical attention needed to assess our mental state?

Although the afore mentioned questions are ones we need to address, I find the question of planning for these moments to be essential in reducing stress and guilt. Because as we all know, development of self independence, adaptation, and self-determination are cornerstones of successful quality measures. As we grow from adolescence into adulthood and old age, are we prepared to deal with chronic issues and feeling of loss of control?