OBJECTIVES The objective of this study was to assess the breadth and usefulness of information available in social media and patient-specific forums on indirect costs of a disease.  METHODS Internet searches of general social media and patient-specific forums were performed to identify sources of information on the indirect costs of breast cancer and schizophrenia.  RESULTS Searches of general social media sites mainly resulted in posts related to available treatments, health awareness campaigns, non-patient opinions and news articles, as well as irrelevant, often malicious posts, such as direct insults to schizophrenic patients. Fewer, but lengthier, posts were identified on patient forums, which could be an effective way of identifying indirect costs of the diseases. Such costs include time spent off work by the patient and their caregivers, delays in restoring independence such as being able to drive, and non-medical items used by women on chemotherapy. Breast cancer appears to be better represented than schizophrenia, possibly because patients with mental health problems face social stigma and thus don’t communicate their struggle as openly. Topics of conversation across forums include adverse treatment events and their associated costs, as well as other costs incurred by the patients due to their deteriorating health and quality of life. CONCLUSIONS This study looked at available information on the economic burden of breast cancer and schizophrenia on its patients and found that general social media appear to be less useful than patient forums. Depending on the disease being researched, different kinds of information become available and prove to be useful in drawing conclusions about the indirect costs of an illness. The breast cancer community appears to be better represented and more vocal about resource use associated with the disease or treatment than the schizophrenia community. The perspective of caregivers is less represented in breast cancer than schizophrenia.