It’s Time to Prioritize Your Needs as a Patient Living with Pulmonary Fibrosis
This is a difficult column to write because I have always enjoyed doing things for other people. However, since my diagnosis of idiopathic pulmonary fibrosis (IPF) in April 2016, I have had to learn the hard way that sometimes I need to put myself first. Lately, I am frustrated with the energy I am putting out for others. It is compromising my physical and emotional well-being.
This is no one’s fault but my own; it isn’t like people force me to do things. They ask, and I usually say yes, so I realize the frustration I am feeling is due to my own actions. I feel like my frustrations are valid because before my IPF diagnosis I could give, help, or support others without compromising my own needs.
I still enjoy doing things for others, but my biggest struggle is when I invest my time and energy into tasks that benefit others without unreciprocated time and energy. We all need help sometimes, and reciprocation is the foundation of strong friendships and relationships. When it feels as though you are continually giving to others and nothing is reciprocated, friendships can start to feel unstable or difficult. I have been experiencing this lately, and I feel a bit guilty because I know others are busy. However, it feels like I’ve given so much of myself in the last little while and I’m still left to navigate many of my needs on my own.
At what point do you cease doing things for others to put your own needs first?
How do you say no to others’ requests and let them know you are prioritizing your own needs?
Recently, I posted a topic on the Pulmonary Fibrosis News forums about self-care rituals and why they are so important. However, this topic goes beyond my self-care needs. It is more about making a point or taking a stance for myself. I want to do things for others, but to do so, especially while living with a fatal lung disease, I need to feel confident that the favors or tasks I am doing will be returned in some way, when I need it.
This is not a stance I want to take, but writing this column might help me hold myself a bit more accountable to the internal dialogue I can have with myself around doing things for others. I need to prioritize my health, and I need to be strategic about where I invest my time and energy. I am going to commit to being a little more mindful of what I do for others and why.
This is a hard topic to write about because I don’t want to be the person who “takes” others’ time and energy on a regular basis, but I also can’t afford to be the person who is always giving. When I am in this position, I risk compromising my health, and I am no longer willing to do that. The best friendships or relationships are grounded in reciprocal roles — balancing giving and taking.
I’ve been closely examining how much I am doing for others and where I can cut back on this. I enjoy doing things for others, but I need those favors to occasionally be returned. Right now, it feels as though that isn’t happening. I am frustrated with this, and I can’t change this in others, so I am focusing on what I do have control — putting myself first.
Join this discussion in our Pulmonary Fibrosis News forums by clicking here.
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Charles R Perry
My college motto is: "Not self but others." There is nothing following that motto. There is no "so I can get something in return;" or, "so I can feel good about myself." It is just "Not self but others." I am unaware of any of my fellow graduates rising to the saintliness of a Mother Theresa but I am sure some of us try to live by that motto.
When I was diagnosed with IPF over four years ago I took that news as something I would live with as long as I live. There are others that depend on me and I will continue to help them as long as I can but I am not afraid to ask when I need help nor do I refuse needed help. (When unsolicited help is offered I may accept it or not but that usually depends on how big that bag of dog food is that I am struggling with to get in my truck.)
mary landry
Hi, I agree with you. It's hard for me to ask but I think getting better at it. I have been "forgotten by family members. And it hurts.
Charlene Marshall
Hang in there Mary! I hope you are able to see my reply to you below :)
Charlene.
Betty Lintern
Hello Mary !! I feel the same way - maybe they don't understand the seriousness of our disease - they are so used to us just "being there for them" that now we need their help -
I feel so isolated and lonely
This site has been so good for me and knowing where everyone comes from is terrific so love and prayers from "Down Under"??
Charlene Marshall
Hi Betty,
I am glad to hear the site has been helpful for you, although sorry to hear you're feeling isolated and lonely. Please know you're among friends on the Pulmonary Fibrosis News site and within our forums. We're here for you and will help as often as we can. Many of us patients (like me) truly understand the seriousness of the disease, and I agree it is frustrating when we've been the support people and are now needing the support but it isn't returned. I'm dealing with this right now, and am having a hard time with it. Sure wish we were closer (I love Australia, I was there visiting from Canada in 2015 & 2017) and we could just grab some coffee to chat about it all. Hang in there, and please feel free to connect any time!
Kind regards,
Charlene.
Charlene Marshall
Hi Charles,
Thank you so much for reading my columns and contributing to the comments. I do like to follow a similar motto as you, and thoroughly enjoy doing things for others. It is not an expectation that things are able to be returned when I need it, but rather a hope as we all need help sometimes. It doesn't become a cause though, ie. I don't do something for someone with the expectation of getting something in return, but a hope, given how often I need help/support. I believe that reciprocation builds the best foundation in friendships or relationships. I like your outlook and how you choose to life your life with IPF, kudos to you! I hope asking for help is always an easy thing for you :)
Kind regards,
Charlene.
mary landry
Just keep going. Try to ask and it is getting a little better. My adult children don't call, once a week send me actext. It's hard.
Charlene Marshall
Hi Mary,
Thank you so much for reading my columns and for getting in touch. I couldn't agree more: this disease is so difficult to deal with, and to do so with little support must be hard. I'm sorry to hear of this, but please know support is out there in a variety of different ways: online platforms (our forum is an excellent place to feel connected with others: http://pulmonaryfibrosisnews.com/forums), in person support groups or even through different charities or disease-specific organizations. I hope you are able to find the support you need to keep going, it is tough but please know we're here for you!
Kind regards,
Charlene.
David Barone
Good topic and ideas,Charlene. I am president of a nonprofit board. I had another member replace me for a time when my IPF resulted in pneumonia and hospitalization, but she moved away. There really is no one else willing or able to take the position. I didn’t feel I could abandon them. I talked about my health issues and got an agreement for half of the responsibilities to go to others. We just started this and so far so good. They know they need to find someone else for the job and that I’ll try to continue until then. I want to continue this activity but not be under pressure and not abandon them unexpectedly. I’m hoping this arrangement works.
Charlene Marshall
Hi David,
Thanks so much for reading my column and for getting in touch with me via the comments. I so appreciate hearing how you are navigating your diagnosis with your roles and responsibilities of a full-time job/task. This is something I am still working on, and am very thankful for the transparency I can have with my employer regarding what I feel I can or cannot do. My biggest fear is something happening that takes me away long-term from my job and like you, I just don't want to feel like I am unexpectedly or re-actively abandoning my responsibilities. Even though I know my team(s) would know this isn't intentional, it still would feel awful for me.
I hope this arrangement works for you as well, and that you can continue to find a good balance. Wishing you nothing but the best!
Kind regards,
Charlene.
David Barone
I’m actually retired but I feel very responsible for this voluntary position. It certainly would be more difficult to work out as an employee.
Charlene Marshall
Hi David,
Ah, thanks for clarifying for me. It would be great if it worked out as an employee position for you... although, I hear once you're retired, most folks have very little interest in working again :) Hope you're spending your retirement doing things that bring you joy!
Kind regards,
Charlene.