Interstitial lung disease (ILD) is a long-term, chronic, and potentially terminal disease. Patients living with ILD can experience the feeling of loss of independence and change in roles over time. Many factors can contribute to loss of independence. These include, but not limited to, having to step out of working society and daily routines as symptoms progress, attending the rehabilitations, and having to encounter with numerous healthcare professionals in the process of management.

There may be role changes in your family. For example, as someone who has been taking care of the family and being the leader of the house, you have become the one who needs to be taken care of. The dynamic of the family can change, and adjustments need to occur. This can be challenging for both the patient and the family during these transition periods.

There can be a change in economic conditions in the household as well. Depending on the patient’s ability to continue working, economic support and income level can be impacted, especially when the patient has been the primary economic supporter of the household. In addition, a portion of the savings and income can go to medical bills.

Feeling of powerlessness can develop once the patient goes down in the steps of treatment and rehabilitation chain. Managing ILD is team-based and involves multiple healthcare professionals -- caregivers, primary physicians, pulmonologists, nurse practitioners, rehabilitation professionals, social workers, nurses, research coordinators, rheumatologists, and other specialist providers. As a result, patients can get lost among the healthcare professionals, and it can get overwhelming. It is important to have a clear communication among all the healthcare professionals and patients to avoid getting mixed messages and to have common goals.

You are the leader of your treatment team, and there are many supports for you to help along the disease management. It is important to address your priorities and goals and make the team know that your needs are met. You can join support groups to share with others who have common experiences. Our program relies on the expertise of our ILD social worker to help you and your family during difficult times to connect you with resources. For questions about support and resources, please reach out to us at 415-353-2577.

Source: Whittemore, R., & Dixon, J. (2008). Chronic illness: the process of integration. Journal of clinical nursing, 17(7B), 177–187. doi:10.1111/j.1365-2702.2007.02244.x