How to deal with guilt from IPF limitations while traveling

Practicing self-compassion and good communication helps me

Charlene Marshall avatar

by Charlene Marshall |

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I love to travel, and I’m grateful I can still do it. Despite the limitations caused by my idiopathic pulmonary fibrosis (IPF), travel sets my soul on fire and provides me with many reminders about the beauty of being alive.

Back in January, I wrote about relating more to older generations than people my own age, inspired by conversations with friends as we planned a trip to Greece. Fast-forward to today: I’m now home from that beautiful, spectacular trip with an abundance of memories. If Greece is on your bucket list, I’d urge you to go.

Beyond those good times, however, I did experience a few challenges as a result of IPF. In particular, I had to work through a couple moments of intense guilt.

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The first was when we were planning an outing with only a few of us. The activity was only a minor risk for me, but I was happy to provide all of the necessary information to ensure my safety in case of a problem: a list of my medications, emergency contacts, and doctors’ names. Some of my friends were still concerned, though, even though I knew how to keep myself safe. That made me feel guilty.

The second occurrence was when I asked friends to slow down and take breaks during an activity that was fairly strenuous. They were happy to accommodate me, of course, but I felt guilty about slowing them down because of my inability to breathe and need to carry supplemental oxygen on my back.

After these incidents, I kept asking myself why I felt guilty. I had to remind myself that it wasn’t my fault I have IPF. Everyone was supportive, kind, and willing to accommodate me so that I could enjoy the trip, so I didn’t have a reason to feel guilty.

I’ve been thinking of ways to fight such guilt feelings while living with IPF. The following are some tips I’ve come up with.

Practicing self-compassion

Being as compassionate to myself as I was to others was key to easing my guilt while in Greece. I sat with my emotions, which also included frustration, sadness, and anger, and then let them pass. I reminded myself that accommodations are just a required part of my life. Practicing self-compassion can go a long way to managing the myriad emotions life can throw at you.

Celebrating our abilities

Many of us living with IPF are quick to highlight what we can’t do as a result of our lung disease, but it’s also important to celebrate what we can do. In Greece, I appreciated my friends’ concern, but I also knew my body and its abilities. I celebrated what my lungs could handle, which helped me combat guilt, too.

Educating others about my condition

Knowledge is power, and sometimes educating others can be empowering. It allows them to understand my needs and helps to keep me safe. It also gives others an opportunity to understand how knowledgeable I am about my condition, positioning me as the expert on my health. That applies to all of us with pulmonary fibrosis (PF).

Setting realistic goals

Being realistic about my limitations and setting appropriate goals helps me avoid injury or emergencies, especially when traveling. If I’d really felt that certain activities were out of reach for me, I wouldn’t have taken them on. But I knew that with the right accommodations and support in place, the goals were attainable.

How have you managed feelings of guilt associated with PF? Please share in the comments below. 


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.

Comments

Bill Burtchaell avatar

Bill Burtchaell

IPF patient. My wife and I have traveled to many countries and many trips to Italy as my wife has conducted cooking vacation classes in Sabina, Tuscany, Sicily and this year at a villa on the Amalfi coast. This year my breathing is restricted and sufficient mobile oxygen liters and battery life is difficult to identify. Would like to find a portable O supply that allows good battery life but not so heavy. Love to hear solutions that have worked for others. Thank you, Bill B

Reply
Mitzi Barker avatar

Mitzi Barker

Good for you! I applaud your traveling- I have
been afraid to go anywhere beyond the battery life of my POC (that is, flights more than 5 hrs or so). I would love to hear from you and anybody else on doing that.

Reply
Wendy Ford avatar

Wendy Ford

My IPF is progressive and I'm battling to get oxygen prescribed. Seems you have to jump through hoops to get it

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Deborah Herbert avatar

Deborah Herbert

Charlene

I am delighted to hear that you had a wonderful trip. Continue to be that warrior that you are.

Deborah

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