It probably won’t come as a surprise to hear that living with a chronic illness is difficult. Chronic illness not only impacts patients physically, but emotionally, socially, mentally and financially. To say that it can be challenging to navigate how to live with a chronic illness is an understatement.
In the case of idiopathic pulmonary fibrosis (IPF), which is a progressive, life-threatening disease caused by the formation of scarring in the lungs, there is no rulebook on how to cope. So how do patients find the best way to deal with their illness?
Unfortunately, there isn’t one answer.
However, it is a question that professionals can help with. It can take years to feel like you’ve established a healthy way of coping with a life-threatening illness. Therapists and social workers may have a plethora of options to help patients cope with their disease, but none may feel right. Coping is so individualized and there is no right or wrong way to do what you need to get through living with a life-threatening disease. That being said, it is important to try different things that might help you cope, and then to try something else if the initial attempt doesn’t work. Learning to cope with and navigate a life-threatening disease is hard work.
Below is a list of various coping techniques that have been compiled from patients with IPF. Please feel free to add what helps you in the comments section below!
Lean on those around you, and offer multiple ways they can help.
Professionals encourage this often because the way one person may want to help you, is the same way another person would not want to be involved. For example, some IPF patients need a lot of emotional support and to discuss the severity of their disease with trusted friends and family. They also need someone to help with the physical tasks of daily life, such as cooking and yard maintenance. There might be someone in your network of support who would prefer to help with those physical tasks before ever sitting down to have a conversation with you about the poor prognosis of IPF and vice versa. Leaning on those around you and offering multiple ways people can help offers choice to those supporting you, likely giving someone more than one way to offer assistance.
Allow yourself to process all the emotions and be gentle with yourself.
Emotions can run wild with the diagnosis of a life-threatening illness, and they can also be extremely conflicting. For example, it is not uncommon to hear some patients say they felt relieved when they were diagnosed because they finally had an answer. It may not be the answer that they wanted and once it sinks in, there very well could be other challenging emotions that creep in. Be gentle with yourself in processing all these emotions upon diagnosis and while living with the disease: there is no right or wrong when it comes to the emotions someone should feel.
Have a back-up list of things that make you happy.
This is particularly helpful to have on days that you cannot do what you want due to physical limitations such as fatigue. Nothing is more frustrating than having a task list and not being able to do those tasks because of a lack of energy, and the impact of this can snowball into numerous other unhelpful emotions and thoughts. Having a list of tasks that don’t exert a lot of energy and make you feel happy, content and productive, will help ensure that even on those days of exhaustion, you still have things you can do if you want to. Some ideas include crafting projects, reading, watching a favourite movie or television show or connecting with others online through various support networks.
This is a pretty straightforward coping mechanism that only includes a pen and paper, or your computer if you prefer digital journaling. The beautiful thing about journaling is that you can determine the topic and write about anything on your mind, because there is no fear of reciprocation. Your paper (or computer) can handle whatever thoughts are in your mind, which can help you focus on the more important things.
However you choose to cope with your chronic illness, please just be mindful that it will not be easy and that it is going to take some hard work.
Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.