If you have been diagnosed with primary biliary cholangitis (PBC), formerly known as primary biliary cirrhosis, you may be wondering about the effect your diagnosis will have on your work life.
In the early stages of primary biliary cholangitis, you may have no symptoms, but as the disease progresses, you may need to ask for help or reassess your capacity to continue to work.
PBC is a rare disease that progressively breaks down the bile ducts within the liver. It is a chronic, autoimmune disease it mainly affects middle-aged women. There is no known cause, though its occurrence has been linked to genetic and environmental factors.
Learn more about helpful links and resources for PBC
While treatment can help slow disease progression and manage symptoms, there is no known cure. As the bile ducts are destroyed, bile accumulates in the liver, scarring the liver tissue and leading to fibrosis and cirrhosis and potentially, liver failure. End-stage liver failure requires a liver transplant.
The most common symptoms reported by people with PBC are fatigue and itchy skin (or pruritus). The occurrence and severity of these symptoms often vary from case to case; while some patients may experience no symptoms for a number of years, others report symptoms such as extreme fatigue and incessant itching. Other symptoms vary, but may include brain fog, jaundice and abdominal and joint pain.
Managing PBC in the workplace
If you are experiencing a heavy symptom burden, your quality of life may be suffering. The symptoms may become severe and can lead to depression, social isolation and emotional distress. This can be difficult to manage in a work environment, as these symptoms can effect not only your productivity, but your mental health as well. The disease can also affect your concentration, decision-making skills and motor skills. Depending on your role and responsibilities, this has the potential to create safety risks for you and your co-workers.
You may want or need to stay at work for as long as possible, but keep in mind that the stress of work can also exacerbate your PBC. Part of successfully managing your symptoms includes maintaining a healthy diet and lifestyle, practicing self-care and avoiding stress.
Asking for help
First, it is important that your employer be made aware of your condition and how it affects you and your employment. You may find it difficult to share your diagnosis with your employer, but chronic liver disease is a disability and certain accommodations can be made to support you.
For example, flexible work options, telecommuting, job-sharing, modified job duties and work environment, extra breaks and leave (with and without pay) are all initiatives that exist to accommodate employees with chronic diseases. However, no accommodations can be made without a request, so try to notify your employer either directly or through your company’s human resources department as soon as possible.
Ultimately, a better work-life balance will contribute to your quality of life and help you manage your PBC symptoms so you can continue to do the things you enjoy.
