It Takes a Village to Survive Pulmonary Fibrosis
You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”
The meaning of this proverb resonates with me in the context of my illness. While I wouldn’t compare being chronically ill to the needs of a child, I believe that it also takes a village to help someone living with a chronic illness, especially when they endure frequent health setbacks and ongoing challenges.
The last two months have been incredibly difficult for me. Between hospitalizations and lifesaving interventions due to multiple bacterial and viral infections, my emotional stability has wavered. While many friends and healthcare professionals expected these difficulties after my ordeal, I’m reluctant to admit how hard it’s been and how close I was to giving up and allowing the negativity to consume me physically, mentally, and emotionally.
During times of adversity, I usually face my struggles head-on. However, on a few occasions during this recovery, I thought the challenge of getting well was too difficult. Thankfully, my friends didn’t let me give up.
I’m privileged to have people with me throughout my recovery and others cheering me on from afar. Their support has given me an overwhelming sense of gratitude and the realization that it takes a village to help someone live with idiopathic pulmonary fibrosis (IPF). That village doesn’t have to be composed of those who live geographically close to you or people you know in person.
I have enjoyed many benefits from having friends and family by my side during this trying time. However, online support communities and those who send their love from a distance also have brought me comfort. Taleena and Michelle, I don’t know what I would have done without you.
While it takes many people to help someone with a chronic illness due to caregiver burnout, each relationship brings something unique to the patient as well.
Following are some of the different groups that have sustained me during these difficult months:
- Online community: Connecting with other IPF patients who understand what this disease is like is invaluable. Not only can they sympathize with what I’m going through and share their own experiences, but also they can offer advice about what helped them during their recovery. On a platform like the Pulmonary Fibrosis News Forums, fellow patients provide tips, share their own perspectives, and discuss topics relevant to our community.
- Professionals and PF advocates: Those on the medical side of IPF have a unique lens in terms of a patient’s physical recovery and needs during an acute setback. Several medical professionals have offered their expertise to aid my recovery, including pulmonary rehabilitation tips, medication management, and exercise regimens to help me regain some strength. Additionally, some fierce caregiver advocates in the IPF community have shared their personal experiences with my loved ones to help them assist me through this trying time.
- Supportive friends: From text messages from friends telling me they are thinking of me to dropping by with coffee and offering a listening ear when I need to process the emotional stuff, I couldn’t have gotten through this without my tightknit group of friends. While they may believe their gestures are small, the benefits of them being there and knowing me on a level that others don’t have allowed me to be vulnerable when I need to be.
- Caring family: Family members who have assumed caregiving roles throughout this ordeal have given up so much for me. I couldn’t have survived without their help, whether they were making meals, caring for my dog, keeping others updated on my progress, or tending to my other needs. Their care, compassion, and physical and emotional support have sustained me through these difficult weeks.
- Considerate colleagues: I’m lucky that I can call my colleagues friends. Not only have they checked in and offered support by phone and text message, they also have assumed my role in the office. Knowing that my tasks are taken care of allows me to focus on my recovery without worrying about work.
Who are the people in your village who help you to survive PF/IPF?
Note: 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 other 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. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.