Life as a New IPF Patient
Welcome to my column!
As indicated by its title, “Younger than 30: Living with IPF,” I am a 28-year-old female recently diagnosed with idiopathic pulmonary fibrosis and trying to adjust to life with a fatal and debilitating disease as a young adult with much on the go.
One of the biggest, and most challenging things I am currently trying to cope with, and am eager to hear about from others, is how to manage the fact that IPF changes/impacts everything in your life! In fact, it’s changed so much that it’s taken me several weeks to determine what I want to write about first for my column. As I proceed through my day, I catching myself thinking, “that would make a good topic,” or “I need to remember to talk about that in my column.”
So, I thought my column today could be about some of the upcoming topics I hope to write about, and outline them here while elaborating a little bit on each one. Some will be relevant to most people living with IPF. Some are more likely to be relevant just for young adults experiencing IPF, but I am eager to hear from you all — anyone who would like to contribute or send me a message — as we’re all in this together.
Here are just a few of the topics that I am considering writing about:
When adults feel responsible for you, another adult
This something I’ve been trying to navigate for a few months now, as my relying on others for help is significantly increasing as my lung function is decreasing. I think, despite my being an adult, there are a few people who feel that they are medically responsible for me when we are together, because they know of my condition, what I’ve been through and am going to go through. I try to ensure no one feels responsible for me, because like every other adult, the only person responsible for me is me. It is frustrating when this assumption or fear of being responsible changes or hinders our plans altogether.
How physical fatigue can impact all social relationships
I am confident that anyone with IPF can relate to this topic! When the simple act of walking, breathing, and talking leaves you physically exhausted, it is easy to want to cancel plans, interfering with social activities and relationships. Unless someone knows how it feels to experience such fatigue, it’s hard to blame them when they don’t understand why you just can’t keep up.
The nuances of suddenly having to be aware of, and avoid, germs at all costs
This is something very new to me! I work with kids and families, and love my job, and suddenly I’m having to re-schedule or cancel meetings because if kids around, I’m at risk of getting sick. Then there is the discomfort that comes with asking if someone is sick in the home, or moving away from someone coughing in public, constantly using a hand sanitizer, or wearing a mask in places with crowds.
The pendulum swing: From a great day to a horrible one in a matter of minutes!
Lately it is not unusual for me to wake up in the morning and feel content and happy, after making a conscious reminder to myself that I should be grateful for another day. But then I get a phone call about an abnormal test result, or something happening to someone else I know with IPF, or I start to feel physically unwell. Lately, even someone saying the wrong thing throws me into a fit of emotions — thanks, steroids! I never used to swing from one extreme to the next in a matter of minutes, and the fact that I do now still angers and surprises me.
Feeling like you’re alone, amid 100+ people who want to help
This is probably the most difficult one to manage and it is two-fold. There are so many people who respond to my concerns (when they ask for them … I try not to voice them aloud often) with “I know,” or “ya I understand,” or “I know how that feels” — and even though they mean well, the response I want to say is “no you do not!” This isn’t a sympathy cry at all, but until you know what it feels like to feel like you’re suffocating just getting up and down off a chair, or walking for a few minutes at a time, you truly can’t know. The other part of this is not wanting to burden people with my issues and feelings, even though they offer to help. Now more than ever, I recognize how busy this stage of life is for people, between kids, managing a house, holding down a job, extra-curricular activities and social demands; this stage of life is hard, and believe me when I say it: you feel like a burden when you want to reach out to someone just to dump all your stuff on them, and you already know what they’re already dealing with. It’s frustrating and it’s tiring to feel like you’re alone, when you’re not, but you kind of are.
The exhaustion that comes from being your own advocate
Reading the literature, the news sites, the social media blogs, and talking to others living with this disease, just to stay on top of relevant medical information, is so very tiring. Then you receive push back from your doctor (luckily, this rarely happens for me because my doc is amazing …). But, on top of everything else, it’s hard to try and keep up with medical advancements in order to effectively advocate for your needs.
Those are a few things on my mind right now, but there are also lots more! I will update as I go, I suppose. Please let me know some of the challenges you’re trying to navigate, especially if you’re a young adult or newly diagnosed with IPF … perhaps we can draw strength in numbers, or work through these things together. Thanks for reading!
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.