Coping Strategies for When Life with IPF Gets Tough

Charlene Marshall avatar

by Charlene Marshall |

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If you’re a social media user, you’ve likely had a laugh or two at the many different memes that circulate on Facebook or Instagram about life being difficult as an adult.

My favorite, and one that always makes me laugh, is an image of a French bulldog lying facedown on a hardwood floor, with a quote: “I can’t adult today. Don’t make me adult.”

I laugh at this because it captures exactly how I feel when my life with idiopathic pulmonary fibrosis (IPF) gets tough.

Life can feel tough because of the progression of my disease or the physical changes that affect my ability to participate in activities or complete tasks. These changes can come from falling ill with a viral or bacterial infection or from environmental changes such as fluctuating temperatures.

Last week, in our Pulmonary Fibrosis News forums, I discussed how rapidly changing from cold to hot makes me feel exhausted and frustratedIn addition to the physical changes, emotional difficulties are associated with life as a young adult with IPF. Some are due to the normal challenges of being a young adult and others are disease-specific.

Whether you are dealing with your own challenges or those of friends or family members, it is important to establish strong coping skills to protect your physical health. Stressful situations can lead to illness or anxiety, which can impact a patient’s breathing.

My coping strategies have failed recently, and I’ve become frustrated and angry. Following are some of the challenges, normal and disease-specific, that I face:

  • Financial hardships: Most young adults have money concerns, especially recent graduates with large student loans. Thankfully, I have a stable and well-paying job. However, I have the burden of having to budget for medical expenses associated with my IPF, including medications, therapies, and even parking expenses at the hospital.
  • Relationship breakdowns: One of my closest friends recently went through a very difficult relationship breakdown. I am so grateful to be able to support her. While unrelated to my disease, it is difficult to see your friends hurting, physically or emotionally.
  • Social obligations: Socializing and celebrating milestones with friends — engagements, weddings, or new babies — helps young adults to build and maintain relationships. As a young adult living with IPF, social engagements often remind me that I may not live long enough to experience these joys. It is also difficult to participate in events because of the extreme fatigue and breathing difficulties that come with this illness.
  • Eating healthily and exercising: Playing sports and eating dinner together are important bonding experiences between friends. I struggle with this because of fatigue and damaged lungs. This feels so unfair.

What are your best coping strategies when life gets tough?

Please join me in continuing this discussion in our Pulmonary Fibrosis News forums.

***

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.

Comments

Roger Mills avatar

Roger Mills

I understand where you are coming from, except that i am old (65). I do have a 15 year old son who is very understanding, but this is scaring him to see me with this crud. Take care.

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Charlene Marshall avatar

Charlene Marshall

Hi Roger,

Thanks so much for reading my column and contributing to the comments. Glad the column resonated with you, and I think that the column and the importance of coping is important for all PF patients, regardless of age. I can imagine it is worrisome for your son, and I hope your relationship can be strengthened by discussing his concerns. Wishing both you and your son nothing but the best!

Warm regards,
Charlene.

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SUSANNAH KELLY avatar

SUSANNAH KELLY

pls pls unscribeme i have been mis diagnosed this is my 3 attempt thxs

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Charlene Marshall avatar

Charlene Marshall

Hi Susannah,

Thanks for connecting with us regarding your desire to unsubscribe from our columns. We unfortunately cannot do this for readers, but would encourage you to do it by opening up the column link and clicking 'unsubscribe' at the bottom. This should work for you! I'm really glad to hear you were misdiagnosed and do not have IPF.

Warm regards,
Charlene.

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Lea avatar

Lea

My biggest challenge is to appreciate and remember joy and laughter, where ever and however it exists.

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Charlene Marshall avatar

Charlene Marshall

Hi Lea,

Thanks for reading my column and for contributing your comments. I completely agree that it can be challenging to remember joy and laughter in each day, as you're right it does still exist. I struggle with this too, and need to do better at it. This disease 'robs' us of that most days I find, and it is very cruel. Wishing you much joy and laughter in your future days :)

Charlene.

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Lauraine Lagace avatar

Lauraine Lagace

You are all such brave people...I don't have IPF but 3 years ago one of my sister died of it and now I am the caretaker of my oldest sister , 79 ,who has been diagnosed 4 years ago. Believe me she does not have your outlook ! She is angry all the time. I can't even bring up stories of time past that were fun and positive. I know she is tired , scared ,so am I.... I know she is in pain sometimes but refuses any type of pain relievers...I feel I should help her more but she refuses what I suggest.....keep your good spirits ipf people...you are an inspiration to people like me who feel so useless.

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Charlene Marshall avatar

Charlene Marshall

Hi Lauraine,

Thank you so much for reading my columns and connecting via the comments. Most especially though, thank you for your kind words and for your dedication as a caregiver to your sister. I know that role is not easy (I would argue that it is even harder than being the patient!) but your sister wouldn't be able to do this without you, so thank you. Regarding her anger, has she ever spoken to someone professionally about this? I don't have this outlook all the time, believe me, I certainly have my bad days and usually my friends and colleagues take the brunt of that (unfair to them). When I get like that, I know I have to enlist in professional support to get my head back on track because it isn't anyone else's fault I have IPF, and it isn't mine either. I'm so sorry this is your experience as a caregiver though, I can only imagine it makes that role just that much harder when she refuses what you suggest in hopes of helping her. Feel free to reach out and write any time. Our pulmonary fibrosis news forums also has a caregivers group, if you feel like it would be helpful to voice how you're coping, you can join here: http://pulmonaryfibrosisnews.com/forums/forums/topic/caregiving-chronic-illness/
No pressure of course, just an added resource for you.

Hang in there, we need more people like you!
Kindest regards,
Charlene

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