Pulmonary Fibrosis is a rare lung disease that causes irreversible scarring of the lungs and progressively worsens over time. Due to its relatively common initial symptoms, it is often misdiagnosed, leading to delays in treatment, which can be very frustrating. There are currently no known medical treatments for idiopathic pulmonary fibrosis, making it more common for affected individuals to feel negative impacts on their mental health; this is why actively focusing on improving the symptoms and quality of life that PF patients experience is of great importance. 

In support of rare disease day, Pulmonary Fibrosis NOW! would like to address some important aspects of living with the disease that are often overlooked. Some of the most significant factors that are less commonly talked out when it comes to a lifestyle for those who have PF include, but are not limited to, grief, loss of control, and financial hardship, all of which can impact mental health negatively. 

Mental Health Impact of Pulmonary Fibrosis

Pulmonary Fibrosis impacts the lungs, meaning that many patients are unable to maintain the energy that they once had. For those with a diagnosis of Pulmonary Fibrosis, there can be a sense of grief, or loss of the life that was once lived. Since Pulmonary Fibrosis is quite an unpredictable disease, every single day can look different. This means that individuals need to cope with the fact that they are essentially losing strong control over their own bodies, a realization that can negatively affect mindset. Hence, it is common for those who have PF to experience stress, depression, and anxiety.

Financial Impact of Pulmonary Fibrosis

Financial hardship is also an important factor that is often not discussed enough-with high medical and healthcare costs, it can be difficult for many individuals to receive the care and equipment that they need; for those who are uninsured, this could cost thousands of dollars out-of-pocket. This can also contribute to mental stress and anxiety.  

What can help?

Incorporating positive lifestyle changes and thoroughly reviewing available coverage for various PF therapies can help ease your mind and keep you feeling better for longer:

  • Connect with others who share similar experiences. Joining a virtual support group could help keep you social and give you the opportunity to share your story.
  • Exercise can help in improving your mood and reducing stress. Utilizing pulmonary rehabilitation exercises that are available online would be an ideal way to keep yourself feeling good.
  • Eating a nutritious diet can play a significant role in boosting immunity and keeping symptoms better managed. 
  • You may think that because depression and anxiety tend to be common, you should avoid consulting your physician. This is not necessarily true. Having clear communication with the healthcare professionals around you can help you access resources to help cope with your illness. 
  • Even with the current circumstances and social distancing guidelines, virtually connecting with  friends and loved ones, or participating in in-home hobbies such as painting or cooking can help you feel productive and connected.
  • Incorporating oxygen therapy can help you continue to do what makes you happy with less shortness of breath.
  • Practicing relaxation techniques, including meditation or acupuncture, can help de-stress your mind, keep you calm, and allow for better sleep.
  • Make sure to do your research, ask questions, and choose a health plan that covers all your individual anticipated pulmonary fibrosis healthcare needs.
  • Make sure that you are not overworking your body–listen to what it is telling you. If you are able to stay active, do so carefully and be sure that you are not putting unnecessary pressure on yourself.

To connect with others who have or are impacted by PF, join our online community forum, and attend our virtual support groups on Zoom.

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