Sarcoidosis is a very complex disease. There are numerous factors which adversely impact the quality of life for patients. Sarcoidosis patients must contend with the complications and symptoms of the disease. In addition many patients are faced with societal perceptions because they don’t necessarily “look sick” and their family and friends may question the validity of their disease, wondering why they are no longer able to function, perform or engage in work or play; or participate in everyday activities. Some patients experience a certain level of stress and anxiety as there are many unknowns associated with the disease. Patients have no understanding of the origin of sarcoidosis; its cause has been elusive, there is no known cure, and patients are often treated with medications for which there are numerous adverse and long term side effects. A huge issue for many patients is an unexplainable overwhelming fatigue which impacts every aspect of their lives. Quality of life issues can impact relationships with spouses, significant others, family, friends, colleagues; as well as affect the patient’s self-esteem. The magnitude of quality of life issues can be totally devastating which can result in feelings of bewilderment, fear, and depression for the patient.
Dealing with sarcoidosis is a lot. It can be overwhelming. People dealing with sarcoidosis are not alone, and things can improve. Patient support groups can be helpful in finding others with whom to discuss similar challenges and experiences.
SarcoidosisUK offers the following:
Our physical and mental health are inseparably linked. People who live with a chronic physical condition such as sarcoidosis are also likely to experience mental health problems. Some reasons why chronic conditions may impact mental health include:
- The anxiety and confusion of a new diagnosis, or waiting to get a diagnosis
- Adjusting to a new life living with sarcoidosis
- Living with pain, fatigue and other chronic symptoms
- Changes to social relationships, employment or finances
- Social isolation
- Low self-esteem
- Stigma and discrimination
It is important to remember that mental health problems are common and are normal reactions to stressful and difficult situations. Patients are encouraged to seek help if needed. Below are some resources that may be helpful.