Quality of Life for People with Pulmonary Fibrosis

Quality of life – also called QOL – is an important concept to understand if you have Pulmonary Fibrosis. The World Health Organization describes QOL as each person’s perception of their position in life, and the way that relates to their culture, values, goals, expectations, standards, and concerns. Some dictionaries define QOL as the extent to which you feel healthy, comfortable, and able to participate in or enjoy life activities and events. 

Ultimately, it is up to you to decide what QOL means to you. Many people with PF choose to consider several different categories, including but not limited to the following:

• Physical health
• Mental health
• Emotional health
• Social health
• Spiritual health

Once you understand what QOL means, you can start to monitor it for yourself. This can be one significant way to measure your own progress and to advocate for your needs. For example, when you have an appointment with your doctor or pulmonologist, you can use your data on QOL to clearly depict what is – or isn’t – helping in life. From there, you can receive/ask for direct assistance with specific goals for your various needs. 

Here is one easy way to start monitoring your QOL: 

• At the beginning of each week, ask yourself, “On a scale of 1 to 10 (with 1 being the worst and 10 being the best), how would I rate my overall QOL?”
• Repeat this question with specific aspects of your QOL. For instance, “On a scale of 1 to 10 (with 1 being the worst and 10 being the best), how would I rate my physical QOL? How about my mental QOL? Emotional QOL? Social?
• Document your response to each question in a journal or on a piece of paper.  
• Then ask, “What is something I can do this week to improve my QOL?” Take note of your response and try it out! 
• Repeat this process each week. 

Monitoring and improving your QOL can be very rewarding but also very challenging. People with PF frequently need support with this, so we review it often in our recurring support groups. We also have an online community forum, plus an entire page dedicated to providing additional self-monitoring tools for people with PF. Measuring progress regularly is one of the most important steps to work towards feeling better.