My Master's Thesis was entitled The Lived Experience of Chron's Disease. I myself have Crohn's Disease and found that the literature and research on the actual "experience" of living with this disease was almost non-existent. My research was based on four women who told me their stories of their "journey" with Crohn's Disease. I will share my findings with you and think that you will find them relevant to PPS. I say this because I presented these findings to a PPS conference and received feedback telling me that the journey of PPS was very similar. I have also presented my findings to other "health" groups and individuals and have come to the conclusion that all of us with a chronic health problem share a similar journey or experience.
Five themes emerged from my research. They are as follows:
1. THE JOURNEY BEGINS.
a). The search for understanding - we all search to try and find meaning to our disease.
b). Why? - As we search for meaning we ponder, Why?, Why me?, Why now?, Why this disease?.
c). Denial - Integrated into the search for meaning we often go through periods of denial as we come to terms with the disease we have been afflicted with. We question our doctors, ourselves, God (higher power), and anyone associated with our diagnosis.
2. ON THE EMOTIONAL ROAD.
Most of us experience many emotions as we come to accept our diagnosis. These feelings often are expressed at ourselves, family, doctors (health professionals), God, friends, and anyone else involved in our diagnosis or life. Three main emotions were found to be common to most.
3. THE TUNNEL.
At this point in our journey we feel like we've entered a long, dark tunnel and are unsure of whether we will get through it or if we do, how we will emerge. This is a pivotal part of our journey as we struggle with the following factors:
a). Physical control - The disease claims us on a physical level. We may no longer have control over ourselves physically in terms of what we used to be able to do quite naturally and without thought. The loss of physical control is most obvious, in most cases, and therefore usually the first "control" obstacle we must face.
b). Emotional control - We may experience loss of emotional control and feel confused at the intensity and duration of our emotions. Some may experience depression and even suicidal thoughts or actions.
c). Work - Almost always our work is affected by our disease. We may no longer be able to physically and/or emotionally continue to do our job.
d). Isolation - Most of us at some point on our journey either isolate ourselves or feel isolated because of others not understanding our newly found limitations (physical and/or emotional). Loneliness is common for those of us afflicted with a chronic health condition.
4. ON THE ROAD WITH OTHERS.
At some point, on our journey, most of us emerge out of the tunnel through the help of others and ourselves.
a). Support Systems - These can take the form of family, friends, health professionals, God, mental health professionals, organizations such as PPS support groups, and others the individual has contact with.
b). Coping Strategies - Development of coping strategies through the process of trial an error were most common.
5. THE LIGHT AT THE END OF THE ROAD
After finding ourselves and others to help us develop coping strategies, we begin to find meaning in life again.
a). Career Decisions - We begin facing reality, however we now define it, and begin the process of establishing and/or ending a career. We are able to make decisions and choices about a career that will enable us to feel productive and/or satisfied.
b). Hope and Acceptance - These are integral components to finding satisfaction and meaning in our lives. They are found and defined through the process of going on the "journey" of our disease.
The "journey" of any chronic illness is not isolated to just the person afflicted with the disease. Through my own personal experience and "chats" with others, I have realized that those living with or closely connected with the sufferer also go on a similar "journey". We, as the sufferers, often do not recognize or appreciate this. Communication is the key to surviving physically and emotionally with a chronic illness. On that note, I would welcome any feedback, comments, or concerns about my research findings.
Your comments and questions are welcome. Please put the author's name or article title in the SUBJECT line of your message