Since sarcoidosis is a rare disease, there is a lot we don’t know about it. Scientists are working diligently to figure out the cause of sarcoidosis as well as find drugs that can be used to treat it. We already know how important these clinical trials are for advancing our knowledge about sarcoidosis. However, in order to improve patient care, it may be necessary to shed a brighter light on the patient experience. Kerrilynn Hall, a Ph.D. student at Northcentral University, conducted research to address this issue. Her dissertation, “Sarcoidosis: The Lived Experience of Patients and Families,” explores the psychosocial impact of sarcoidosis. The concept of ambiguous loss as well as the Family Systems-Illness model shape the theoretical framework of her research.
“Ambiguous loss” is a term coined by Dr. Pauline Boss in 1970. It refers to the feeling someone has while going through something traumatic with an unclear reason. Usually, the term is used to describe people whose loved ones have gone missing or whose loved ones are suffering from dementia. However, the term can also be applied to people who are suffering from a condition for which there is no known cause. Sarcoidosis patients may experience ambiguous loss because they experience severe symptoms and are unsure why. Being able to associate a clear reason for pain or stress can provide some peace of mind, however, when someone is enduring adversity for seemingly no reason at all, it becomes even more difficult to accept.
Family Systems-Illness Model
The Family Systems-Illness Model (FSI) was developed by Dr. John Rolland, who co-founded the Chicago Center for Family Health. In this model, a family is considered part of a “system.” Also a part of the system is the disease, the health care system, and medical professionals – all of which have the power to disrupt the family’s dynamic. When a person is diagnosed with sarcoidosis, not only does that person’s life change, but so does his or her relationships with family members. Diseases cause stress, especially when they lead to financial turmoil or confusion. Stressors like these can create obstacles and remove peace of mind from a family, changing the relationships between each person (Hall 18).
Hall conducted her research by conducting semi-structured interviews with twelve sarcoidosis patients. She asked them questions about their quality of life, all of which related to their experiences with sarcoidosis. She discovered that many sarcoidosis patients live in constant fear, since sarcoidosis can be unpredictable. One participant said, “When you are sick, it is terrible of course, but even when you supposedly are in remission you are living in constant fear of every little physical symptom that you get you think it is the sarcoidosis coming back” (Hall 70). This fear surely impedes upon a patient’s quality of life, for it raises his or her stress significantly.
Hall also sought out to find how sarcoidosis affects patients’ relationships with their loved ones. She found that many of the patients she interviewed felt that their families did not understand what they were going through. This is disappointing for many patients, since family members and close friends should be some of the few people that they can count on. One patient reported, “I think there are several challenges, the first one is the ‘you do not look sick’ thing with the family and friends and coworkers they do not understand that you are sick so that is a misconception” (Hall 72). Constant misperceptions of sarcoidosis can make it more difficult for patients to live with the illness. Fitting in becomes a challenge, even with people they used to feel comfortable with.
There is the challenge of looking normal on the outside and feeling like hell on the inside and then constantly worrying about how people perceive this.
Why is this Important?
This type of research is important to the sarcoidosis community because patient voices are an important part of patient care. Sarcoidosis varies in severity and disease manifestation, so no two sarcoidosis patients are alike. They face similar challenges, like the fear of what their illness will bring them next or the struggle of wondering what caused it in the first place, but they also face very different challenges. As the FSI model makes clear, people are affected differently by illness for many reasons. For example, the severity of the illness, the strength of a support system, the financial burden, and the amount of trust in a physician can all influence the well-being of a patient and his or her family members significantly. It is also important to keep in mind that patients and caregivers are often dealing with feelings of ambiguous loss on top of the stress and pain they feel daily. Taking the opinions and emotions of patients and caregivers into account is an important part of patient care, which is why work like Kerrilyn Hall’s dissertation is a step forward for the sarcoidosis community.