2 Unusual Coping Strategies for Those Living with Pulmonary Fibrosis
Following a life-threatening illness diagnosis, most patients learn to cope with their new reality in unique ways. Some patients seek professional help, such as counseling, for chronic illness coping strategies. Many patients lean on family and friends, while other patients learn to cope on their own through trial and error.
After my idiopathic pulmonary fibrosis (IPF) diagnosis in early 2016, I had a hard time coping with my new reality. I did not want to live with an illness with a prognosis of three to five years; a disease that would eventually rob me of my ability to breathe. Thankfully, I cope a lot better now. However, illness coping has a steep learning curve, so my methods are a work in progress.
There are some days that I cope well with my illness and consider myself a fierce advocate for pulmonary fibrosis (PF) awareness and feel comfortable talking to strangers about why I wear supplemental oxygen at 30 years old. On other days, I am angry at the world and regularly cry because I hate living with a chronic illness as a young adult. My age really shouldn’t be relevant because no one deserves to live with PF, but sometimes I do get stuck in how much it sucks to live with IPF in my 30s.
I believe that having a balance of both good and bad days is natural, and actually portrays healthy coping. I consider myself poorly coping when I am excessively emotional or angry with those around me who try to help. No one deserves my anger, but it usually occurs unintentionally. I understand the irritability is upsetting to others. Others expressing upset with me serves as a warning that I need to re-evaluate how I am coping and consider how my methods impact those around me.
Thanks to my recent downward spiral, I adopted two unusual coping strategies that have been effective in helping me deal with my lung disease. Not only was I physically feeling unwell during this spiral but I also had an argument with a close friend and felt my illness uncontrollably compromised my work performance. All of these things created the “perfect storm” for my emotions to run wild, and for my coping feet to be pulled right out from underneath me.
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I had to dig deep into my emotions to figure out how to pull myself out of this downward spiral. I am happy to say that I believe I am on the other side of it — things are trending upward. The coping strategies I used to turn this experience around were unusual for me, but they have helped. They are:
Lowering my expectations of others
I take a lot of pride in friendship and am known to drop everything to help a friend who needs me. That isn’t always healthy when it compromises my self-care, but I can’t help it: I will do anything for my friends. So, if my aid doesn’t feel reciprocated when I am the one in need, I really struggle. I’ve had to ask myself what I can change about this situation because I can’t make others be there for me.
I read a quote by motivational speaker Robert Hill Sr.: “A person can only waste the time and energy you give them an opportunity to waste.” It was time to change the energy I was letting my friends have by lowering my expectations of others. That isn’t a bad thing; it just helps me feel less disappointed when I need support and someone isn’t there — because I wasn’t expecting him or her to be. It’s actually made my life a lot less complicated and more peaceful.
Turning inward or withdrawing
Usually, this is a red flag that tells others you aren’t coping well or are experiencing sadness, depression, etc. Sometimes that can be true, but there’s also so much peace and healing found in solitary quiet. Spending time alone can be rejuvenating and taking the opportunity to turn inward, away from others, is sometimes just what I need to cope with all the aspects of a life-threatening illness.
Do you have any coping strategies for dealing with your PF diagnosis others might consider “unusual”? Share them in our PF forums. Your coping strategies could help others in need!
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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.
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Comments
Bernd Felgner
I joint a support group, this has really helped me because we work out twice every week and I see how other patient cope. Some people are much worse off than I am. It has really opened up my eyes.
I was diagnosed with IPF in 2012.
Charlene Marshall
Hi Bernd,
Thanks so much for reading my columns and for connecting via the comments. I'm so glad to hear that joining a support group has been helpful for you! Connecting with others on a similar journey, and understanding how they cope with this disease is really helpful, isn't it? I find this really beneficial as well. Is your support group through your hospital or main treatment center? Is it led by a physician/professional or is it peer-led (meaning another patient leads it)? Always curious about this as well. Glad it has been helpful, and thanks for sharing your experience with us. Wishing you well!
Charlene.
Sandy vanzyl
Hi Charlene , coping skills are so important and I definitely need to find some other ways of coping. With you being diagnosed so young , my heart goes out to you and I pray that scientists will find a way to cure this horrible debilitating life changing disease. I'm almost 65 so itbis different for me than for yourself , you have a full life to live and have seen much more life to live. I've realized a long time ago that we shouldn't expect too much from friends and maybe even some family , everyone is living their lives and usually don't want to be around such illness or have to listen to the endless coughing (that's the hardest part for me , the coughing). I've now found that if I crank my oxygen up to 15 it helps tremendously and helps the episode of coughing much shorter, my body hurts from coughing for the past 15 years but I did work full time up until the end of 2017. Laughter is a great coping skill for me and having text msgs with friends makes my day better ...getting out and talking to people about anything other than this is also so great ! A friend came over last night and just talking about other things was fabulous . I try hard to be optimistic and work to look nice (hair and makeup) for my husband , I mean who would want to come home to a miserable , pajama clad , dirty hair, no lipstick wife....I haven't tackled my false eyelashes since December 2017 but I'm going to try to do that soon. All we can do is live for today and hope tomorrow is a good day for us . A man in our neighbourhood was killed last Saturday at an intersection here, on a motorcycle ...57, gone. So we never know our days ahead , but I am glad I'm not your age because that's so very young Charlene. Wish you all better days ahead my friend. I live in Ottawa by the way ?
Charlene Marshall
Hi Sandy!
I didn't know you were a fellow Canadian - we aren't too far from one another, and next time I am up in the Ottawa direction I'll reach out and see if we can connect in person. I'd really like that :)
As always, thanks for giving your time to share your experiences on the forums and through commenting on my column. It's always great to hear from you!
I agree with you that effective coping skills are so important, although there aren't "blanket" ones that work for everyone unfortunately. Sometimes I feel like I have good coping skills, and other days I dissolve into a puddle on the floor because I don't have good enough ones. It ebbs and flows I suppose! Thanks for your kind words re: age and this diagnosis, although I wish no one had to deal with it regardless of age... it is such a cruel illness. I agree with you as well re: the expectation from others, although I can't help it because I feel that if the roles were reversed, that I'd be there for my friends in a way they aren't for me right now. Well, some of them aren't. That said, I also understand it is their choice and their life, so I absolutely understand if they choose not to surround themselves with an illness like this. Lowering my expectations a bit has actually brought me an unexpected level of peace which has been nice and I've welcomed with open arms.
Glad you're finding ways to help manage your cough, and I am so inspired by your outlook on life despite your illness. You're right - we just don't know how much time we have left so it is important to be in the moment and focus on the good. I'm so sad for that man on the motorcyle, I hope he didn't feel any pain. Take good care, and as always, wishing you well Sandy!
Cheers,
Charlene.
Carri H
Hi I am 58 years old and just got diagnosed with PF . I am all new to this . I am scared , freaking out , and at times just plain mad. I had never heard of this disease before and they thought I had copd . How I wish that was true. If anyone has any advice or anything please let me know. I live in Akron Ohio and I am being referred to the Cleveland clinic so I believe I am in good hands!
Charlene Marshall
Hi Carri,
Thanks for getting in touch with me via the comments, and for reading my columns. It's always nice to hear from others who are facing this disease as well, although I certainly wish it wasn't IPF bringing us all together. So sorry to hear of your recent diagnosis, I remember that time well and it is very scary and confusing. My biggest piece of advice is: stay off the internet in terms of obtaining details about PF, or at least research it through only credible websites/sources online. Feeling mad is very validated Carri, and if there is any opportunity to receive support through your local treatment center, don't be afraid to embrace it. It has really helped me!
A good place to find support and some credible information is our Pulmonary Fibrosis News forums, which you can join here:http://pulmonaryfibrosisnews.com/forums/ .. there are lots of wonderful people on that site who can help with advice and support. Glad you're being referred to the Cleveland Clinic. They are excellent, so you're correct that you are in good hands.
hang in there Carri, and write anytime!
Warm regards,
Charlene.
Zelick
I believe the first thing you have to do is get the 3-5 year thing out of your mind. I am lucky that 2.5 years after diagnosis I am still doing well, physically. If I did not know about the 3-5 year average life expectancy statistic, I’d be feeling pretty optimistic. So my answer is to convince myself, that statistics and averages do not apply to me, and I will do much better. This may be a bit naive on my part, but it’s working.
Charlene Marshall
Hi Zelick,
Thanks so much for getting in touch and for reading my columns. I like your advice of forgetting the prognosis of 3-5 years, and I think that is a good idea as well, although it is hard for me to forget that when trying to plan a life for my 30s or 40s. I am also 2.5 years post diagnosis, and doing fairly well also so hopefully the prognosis / life expectancy thing is just a number. I agree with you and convince myself that it doesn't apply to me (usually) and that my stubbornness will bode me well in surviving this disease for a long time. That is my hope anyways! Glad you continue to do fairly well, and I hope you do for a long time :)
Thanks for writing!
Charlene.
Linda
Hi I've just been diagnosed I dint really know much about it untill I got on this forum I'm scared but have appointment today with head of transplants in 60 but a young sixty and I've worked so hard all my life for a great retirement now that's gone out the window I'm not working ATM my doctor won't sign me back to work due to my job I work with silver and gold dust which is terrible for lungs
Charlene Marshall
Hi Linda,
Thanks for getting back in touch with me, although so sorry you're having to be part of our IPF/PF "community". I hope your appointment with the head of transplantation went well today? Glad your doctor is being proactive in keeping you off work (as hard as that is for you) because the longer your current lungs can last, the more apt you are to successfully make it to transplant. I know it is hard though, and way easier to think like that than to live it. Hang in there Linda and feel free to connect with us anytime!
Warm regards,
Charlene.
Tyrea White-Bayyan
Hello, My mom has just been diagnosed with IPF. What can I do to help her. All of the things she enjoyed doing have been snatched away like swimming, sitting in a whirlpool, shopping and visiting friends & family. She has to carry around a helium tank full of oxygen. It’s difficult for her to get around with it all. Walking to the mailbox at the end of the driveway will have her exhausted. I don’t like seeing her like this. Her oxygen machine goes only to a level 6 and she has it cranked to 5 Sandy what time do you have that you can crank your to 15. Are there any exercise that help, meds, or foods. Help she won’t go anywhere without a wheelchair because she can’t Climb stairs or walk far distances.
Charlene Marshall
Hi Tyrea,
Thank you so much for reading my columns and for getting in touch via the comments. So sorry to hear of your Mom's diagnosis of IPF, I remember that time well and it can be filled with so much emotion, including anger and confusion. I hope both you and your Mom are gentle with yourselves in the next few weeks, months.
Unfortunately, accepting that the physical things she can no longer do is part of the grieving process. That said, I know it is way easier said than done and will likely take some time. Does she have a portable oxygen concentrator (POC) yet? If she gets one of these, she would be happy to still go shopping (oftentimes, they can be carried in a backpack) and visit family and friends. My POC has been my lifesaver in terms of still getting to do the things that are important to me, although they no longer include swimming or going in a hot tub either.
If you're interested, please feel free to join our PF forums at: http://pulmonaryfibrosisnews.com/forums/ .. there are lots of wonderful people on there who can offer your Mom advice, as well as you as her caregiver. It is so hard for those who love us to see us decline so rapidly from this disease. There are medications that can slow down the progression of this disease, but not unfortunately stop it.
Please feel free to write any time. Hang in there!
Charlene.
Peter Davies
Hi Charlene , thanx 4 all ur hard work on this site i live in england and have tried contacting you before to no avail .my name is Pete Davies 58 2012 had lower lobe removed ,worked till august2017 loved goin 2 work but now have had 2 stop,and am now in full blown mode awaiting lung transplant.i would like 2 be a part of ur web site as it really keeps me goin . Urs in hope Pete x
Charlene Marshall
Hi Peter,
Thanks so much for reading my columns and for getting in touch with me. I am so grateful for your kind words, and glad the site has been helpful for you! Please feel free to email me directly anytime at: [email protected]. I know emailing can be easier to connect than using the comment section of columns :)
Congratulations on your listing for lung transplant, that is very exciting, albeit scary likely too! We'd love to have you be part of our site, have you joined the Pulmonary Fibrosis News Forums yet? You can here if you'd like: http://pulmonaryfibrosisnews.com/forums/
Looking forward to hearing from you and I'm so glad you're part of our community. Wishing you well!
Charlene.