For patients diagnosed with pulmonary fibrosis (PF), coming face to face with the realities of the disease happens quickly. This is often due to the physical impact of PF and that over time, the patient’s abilities to do things they once could do will shift dramatically as their disease progresses.
There are a plethora of changes that a patient will go through after their diagnosis, including enduring the horrible side effects from some of the medications used to slow the progression of PF, or dealing with an intense schedule of medical appointments. Another significant change a patient will inevitably experience is in their ability to work full-time, along with their ability to complete daily tasks in the home or run errands. All of the things that physically happen to a patient as result of their diagnosis prevents them from avoiding the realities of what it is like to live with a life-threatening illness. However, friends and family members are in a position where they can avoid those harsh realities.
Talking about your disease
When discussing your disease with others, it’s common for friends and family members to grasp onto optimism and to truly believe you will outlive your prognosis. It’s a tactic that loved ones often use to protect themselves from the fact that this is a life-threatening illness and that the patient is in danger.
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Even when a patient is realistic about the prognosis associated with the disease, it’s still important to hold onto hope, positivity and optimism. However there is a delicate balance between being realistic and facing the inevitable (without a transplant) and honouring the hope and optimism that others have, which is that you will miraculously be well for years to come.
That all being said, there are patients out there grappling with how to make their loved ones aware of how serious their disease is. Optimism and positivity are important, but so is a patient’s desire to be realistic and subsequently, the need to discuss some of the harder topics that come with a life-threatening illness.
Developing a support network
It’s important to remember that everyone processes hard information differently, so it helps to have several friends and family members available to support you, based on different needs. For example, some friends or family members may need to know all the details about what is to come in the face of this disease, while others may need to be optimistic and hopeful for you (even if that hope seems unrealistic).
Being aware of who copes how, and sharing information with them accordingly can be beneficial for both of you. When you need to be realistic and explore the prognosis or what the end-stage of this disease will look like, engage those friends who also need to know all the details and can have those hard conversations with you. When you are seeking out hope and positivity — perhaps when things feel overwhelmingly difficult or an appointment just revealed bad news — embrace those who are optimistic in their way of coping.
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