Living with a life-threatening disease, such as idiopathic pulmonary fibrosis (IPF) doesn’t come with an instruction manual. Unfortunately, this leaves patients and caregivers to figure it out as they go. Just as unique as the disease is to each patient, so too is how they choose to live with it.
That being said, there are some consistencies. It’s helpful if PF patients’ caregivers, friends and family members all possess similar qualities. Regardless as to whether a patient is newly diagnosed, stable and living well, or dealing with the final stage of their disease, at some point patients need the help and support of those around them. From a patient’s perspective, there are certain caregiver qualities that are particularly helpful.
Since IPF is an invisible illness, and one that eventually robs a patient of their most basic human function (breathing), this disease is incredibly frustrating for patients. The prognosis for IPF, while it’s just a number and not reflective of everyone’s experience with the disease, is also terrifying for patients. With the combination of these two things, it is very common for patients to act or demonstrate behaviors that may seem out of character. If your loved one seems to be acting strange, please have patience, as they may not know how to cope with their illness. It could also be fear, anger, sadness or frustration.
Living with IPF can be very socially isolating. Since it’s a rare disease, patients often don’t live near each other. As a result, it can feel like no one truly understands what it’s like to live with such a debilitating illness. Showing dedication to a patient by attending appointments with them, checking in or and sticking with them throughout their illness, significantly reduces the feelings of social isolation and fear of being alone through their disease.
While it’s impossible for a caregiver to physically understand what a patient with IPF is experiencing; an attempt to understand the emotional and mental fears through honest and frequent conversations with the patient means a lot. Actively listening to a patient demonstrates a real attempt to understand what living with IPF is like which is very much appreciated by patients.
Living with a disease that steals a person’s ability to breathe leaves patients feeling exhausted — physically, mentally and emotionally. As a result, many patients need to leave flexibility within their schedule to cancel plans if needed, or they may not be able to commit to a social event in advance due to the uncertainty of their health. This can be frustrating not only for patients, but for their friends and family members as well. Flexibility takes a lot of patience, and is appreciated by those living with IPF.
Learning to live with a life-threatening disease often means accepting your limitations. This goes for a caregiver, friend or family member as well. Hobbies and shared interests that were once enjoyed by the patient and their loved ones may no longer be possible as the disease progresses. Accepting what may no longer be possible for a patient but loving them anyways is one of the best gifts that friends, family members and caregivers can give a patient living with IPF.
As a patient, are there other qualities that you appreciate from those supporting you through your journey with PF?