Choosing Friends Who Support Healthy Habits as an IPF Patient
Like with all chronic illnesses, patients living with idiopathic pulmonary fibrosis (IPF) have a lot to contend with. Although IPF is a progressive and life-threatening lung disease, the physical challenges it presents, such as shortness of breath, fatigue, and cough, are often not the most difficult aspect. At least, they haven’t been during my five years as an IPF patient.
Learning how to efficiently use supplemental oxygen has been difficult for me. The other day, I was discussing with fellow patients over Zoom the challenges supplemental oxygen can present during even the most basic tasks, such as showering. Unless you’re living with oxygen, it’s difficult to comprehend how hard it is to be tethered to a cannula as your literal lifeline.
The chronic, dry cough common to most IPF patients has also presented its own set of challenges in the last 18 months. People have shied away from me amid the pandemic, unsure if my cough is the result of COVID-19.
The physical aspects of this disease are one thing, but sometimes the way others treat me takes an even greater emotional toll.
The social implications of IPF are particularly challenging. I occasionally have to miss out on gatherings, especially if someone is ill or I’m too tired. Other times, activities are too physically demanding.
For those with lung disease, it’s crucial to your mental health to surround yourself with supportive friends who want to see you thrive, despite your limitations. As someone who is always working on personal growth, I appreciate the friends who encourage my crazy ideas. Personally, I’ve found it really difficult to be around friends who aren’t in a good mental place themselves.
It may sound harsh to want my friends to support me even when they’re struggling. That isn’t my intention; I will always prioritize supporting my close friends when I have the capacity to do so. However, chronic illness patients often have so much to deal with that it can be hard to take on others’ challenges, too.
When a friend is struggling with their own mental health difficulties, they may not be as supportive as you want them to be, which can feel discouraging. This is especially true when you’re facing a disease-related obstacle. For example, many patients struggle with diet, and proper nutrition is important in managing IPF. Eating well isn’t always easy, but it can be made easier with friends’ support and accountability.
Recently, I have adjusted my diet to include more vegetables and less red meat because I’ve read it may possibly reduce IPF symptoms. But it’s been hard. I haven’t felt supported by some people in my life who don’t prioritize diet and exercise, because they aren’t in a positive mental place. That’s been hard to accept, and I’ve needed to turn elsewhere for support as a result.
IPF patients are forced to prioritize this debilitating lung disease, and it’s hard to find the energy or mental capacity to focus on other aspects of our lives. When we begin a new protocol, such as a diet or exercise regimen, in hopes of better managing our disease, it’s really helpful to have the support of our friends.
This has been a tough lesson for me to learn, but from one patient to another, surround yourself with friends who are able to support you. It’s hard enough to manage every aspect of this disease. Dealing with anything but supportive friendships may be too much. Select your tribe carefully.
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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.
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Comments
Levern Allen
Except for the age this sounds like me. Living in a retirement community my friends have learned to invite me to dinner and not be offended if I'm not up to it. I enjoy conversation. It seems to simulate me. My biggest problem is walking from one place to another. I rest often. Looking to get a power chair soon. As for that shower, I have learned that the cannula really is plastic. I might put it in my mouth when I wash my face. It does't melt! I try to enjoy life any way I can.
Charlene Marshall
Hi Levern,
Thanks so much for reading my columns and connecting via the comments. Sorry to hear you're also dealing with this cruel lung disease, but happy to hear you also have understanding friends and they accept what you can/cannot do; it's important and I think really makes a difference in our lives.
Char.
Diane Marie Hogan
I was dealing with IPF due things that caused me to have very serious lung issues. I ended up on oxygen for more time that I hope I never have do again. I couldn’t breath good enough to do things I was used to doing which was really upsetting. I had to depend on my husband and family more than I wanted to do. I ended up having a double lung transplant on July 6th 2020. I have to take a lot of medicine every day, blood work often as needed, doctors visits, X-rays and tests when needed. I am finally getting back to doing things again but I still have to be careful so I don’t hurt myself. It has been a struggle but I am getting there. I understand what anyone with IPF is going through.
Charlene Marshall
Congratulations on your lung transplant, Diane - that is wonderful news! Yes, the medication is a lot and overwhelming but it certainly is better than requiring oxygen and being unable to breathe :) Very happy for you, thanks for reading my column and reaching out to share your story.
Charlene.
Mike Fryman
Charlene it has been great to read your posts on the forum and on other sites. You are inspirational, i was dx about 15 months ago, i am 70 and have been very active in my life. I am trying to get insights how to live as healthy as possible and you have been very healthy. I have lost about 30 lbs over last year. I use recumbent bike and treadmill, but i have orthopedic disabilities(knee and back) so have to be so aware. I have had a tendency to always do to much. I am a retired military RN, finished my career at childrens hosipital Psychiatric hospital. I have tried to enter the forum and have not been able to. Not sure why. But mostly wanted to say thanks for giving "hope"! I am O2 dependent and on ofev/cellcept. I await your posts for new strategies, as i want to live. I play music, read a lot, work in the yard and have a great supportive wife. Guess i got it pretty good. Thanks for reading. Feel free to mail me back. Thanks, Mike
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Charlene Marshall
Hi Mike,
Thank you so much for reading my columns and reaching out via the comments. It's so nice to hear from you and it sounds like you're really working hard to ensure a quality life despite IPF - kudos to you! Keep up with the active lifestyle, that will undoubtedly help you. I'm glad my columns are helpful to you, this inspires me to keep writing for others and myself.
Take care,
Char
MAry Hird-Howarc
Question: what kind of exercises help IPF???
Charlene Marshall
Hi Mary,
Thanks for reaching out and good question: pulmonary rehab and exercise in general is very good for people with IPF, but of course with caution and exercise modified to the capabilities of the patient. The best kind of exercise should be advised by your doctor as they know your limitations and can recommend safe but effective exercises for you. Can you ask your doctor to be referred to a pulmonary rehab specialist/facility? They should be able to help.
Char.