As a patient living with a chronic illness, I’ve become comfortable with people using clichés to try to comfort me. People naturally want to relate to others, but it’s often hard for someone who’s healthy to understand the experiences of a young adult who requires oxygen to breathe.
One cliché I often hear is “life is short.” While none of us know when our time will be up, those of us with IPF know that the likelihood of our lives being cut short is one of the cruelties of this disease. This can be agonizing mentally when you’re forced to spend prolonged periods of time away from loved ones.
Typically, September is like a new start for many, as a new school year begins and the season changes from summer to fall. For our family, it means the time we spend together at our cottage must come to an end, and the prolonged period apart during long winter months begins. This is just one of the reasons I find September a hard month as an IPF patient.
Despite the heat and humidity of summer, I thoroughly enjoy our time at the cottage. I love being on the beach and spending quality time together. My cousins and I see one another often at the cottage, but during the frigid winter months, when the cottage is closed for the season, our visits are only sporadic.
This can feel scary to me as an IPF patient. What if something happens to me in the time that we’re apart? One could argue that something could happen to anyone during prolonged periods away from family, but the risk seems greater with a disease like IPF.
On Labor Day, the first Monday in September here in Canada, I stood on the beach hoping and praying to see the same views next spring. I want to remain well enough to swim with my cousins, go kayaking, and keep up with the social aspects that come with life at the cottage. Most of all, I want to continue defying the prognosis of this cruel lung disease. I value the quantity of our moments together rather than just the quality.
Another reason I dislike September is the impending cold and flu season. Long before the pandemic, I feared cold and flu season because I am immune-compromised and tend to get sick easily. For IPF patients, a simple cold can escalate quickly and become detrimental to our overall health.
Before COVID-19, I remember advocating on social media about the importance of getting a flu shot and staying home when you’re sick. Now I think people understand this a lot more. Knowing that in September we’re inching closer to the cold and flu season leaves me feeling anxious and fearful. I don’t want to risk getting sick and losing more lung function than I already have.
I do enjoy the cooler temperatures and crisp air that accompanies September, but since my diagnosis in 2016, September has been a busy month for an entirely different reason. September is Pulmonary Fibrosis Awareness Month, and the lack of awareness about this awful lung disease is hard for me.
A few years ago, I wrote about how PF Awareness Month feels less important than other disease awareness months, and I still feel that way. Unfortunately, an estimated 50,000 people die each year from IPF in the United States, which is more than the number of people who die from most cancers. It breaks my heart that most people still have never heard of IPF. How can it be so deadly and remain so unknown?
Patients, caregivers, professionals, and advocates work hard each September to create awareness for this terrible disease, but it just never feels like enough. As a patient living with IPF, this is disheartening, and I’ve grown weary of September over the years because I want to raise awareness and do my best, but I’m not sure it’s working.
I know I will adjust, but I’m curious to hear from other IPF patients if there are particularly difficult times of the year for you. Feel free to share in the comments below or connect with us on the PF News Forums.
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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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
The Link LonkSeptember 16, 2021 at 09:00PM
https://pulmonaryfibrosisnews.com/2021/09/16/why-september-is-hard-for-me-as-an-ipf-patient/
Why September Is Hard for Me as an IPF Patient - Pulmonary Fibrosis News
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