Being ‘Too Busy’: The Perspective of a Chronically Ill Patient
While talking to a close friend recently, I was finally able to admit how much I am struggling with how chaotic life seems for everyone. Unfortunately, I cannot offer much insight into why I am struggling with this, but our conversation has led me to some theories as to why this might be bothering me.
To provide a little more insight: For the last few months, I have been hypersensitive when people tell me how busy their lives are. I think part of this hypersensitivity comes from the fact that almost every time someone tells me how busy they are, I sense an undertone of unhappiness or exhaustion. More specifically, people don’t often say they are happy that their days are busy, chaotic, and constantly filled with appointments, errands, tight schedules, and other things.
Lately, it seems guaranteed that the response to asking how someone is will be about how busy things are, either at work or in their personal lives, with family, appointments, or recreational activities.
If people are happy with this level of busyness, that’s one thing. But to me, it doesn’t feel as though people are happy with today’s chaotic lifestyle. And yet they continue on this path of trudging through it. This is what bothers me. What is interesting about it being bothersome is that it actually isn’t my life, so why do I get angry in response to others commenting on how busy they are?
I have some theories about why this might be, although I still have some work to do before I’ll fully understand. Here are my thoughts:
Perhaps I am hypersensitive to others who talk about how busy they are because I miss this for myself. Before my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016, my life was drastically different than how it is today. I participated in sports, chaired clubs and committees, maintained several social circles, worked full-time, and was on the go from sunup to sundown. I can’t do this anymore. Do I miss this and, therefore, am angry or emotional in response to the people who can?
With a lung disease, I’m forced to slow down because when I can’t breathe, nothing else matters and my abilities change completely. I am also sensitive to the fact that even post-transplant, I’m not going to return to the level of stamina I had before my diagnosis. Things will improve significantly, but I will never be able to do what I could before my diagnosis. So, subconsciously somewhere, am I angry about this, and is this what’s causing my sensitivity to others who say they are so busy?
This is a big one that I need to work on because I am not responsible for others. I want the people I love most to really understand the importance of slowing down and appreciating the quality of life. I say this, but part of me doesn’t really want them to learn because the only way I learned was by being diagnosed with a life-threatening illness. I don’t want them to get a diagnosis like that or have something horrible happen that reminds them of how precious and short life is.
However, I do want them to understand that just trudging through life without enjoying it and without slowing down to appreciate the finer things isn’t how we’re supposed to do it. I like to listen to a song by country singer Tim McGraw that captures this well: “Live Like You Were Dying.”
I want my friends and family to live like this, to capture and celebrate the quality moments in life, but I don’t want them to be in the process of dying. When they share how busy they are, I almost want to roll my eyes and shout that being so busy is not important, and it’s not how we’re supposed to live.
I’m also aware that I might begrudge someone who is constantly busy because it means we aren’t spending time together. I am well aware that this is extremely selfish, and it’s just a thought. I’d never say this to someone because everyone is entitled to their own life and choices. That said, it is likely that I will have an earlier expiration date then they will, and I don’t want to lose out on time we could spend together.
Can anyone else out there relate to this? I’m really struggling with not wanting to feel this way, but I do, and that’s just the way it is.
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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
Jorgen Piene
Hi
I read your comments and do think that what lumbers you is a non acceptance of your diagnosis and in reality envy those who are running around often like headless chickens. Why use a a calory of energy on on others behaviour and complaints how busy they are. You have to the contrary (I hope) good time to focus on the important sides of life, relaxed and happy for what life has brought to you and still give, even if you are hit with IPF.
Life was put upside down, but nevertheless it is still worth living, and I promised myself my family and friends shall never see me angry or envious on them because life is what it is, unpredictable.
Stop mouning and say as Monty Pyton, «look at the bright sides of life»
Charlene Marshall
Hi There Jorgen,
Thanks for your comment, although I am not able to speak to it as it isn't one that resonates with me. Everyone copes differently and in their own way, and while I appreciate your promise to yourself to not let your friends and family see you angry or envious, not everyone feels the way you do. I would appreciate it if you would edit your comment specifically that says "stop mouning", as everyone is entitled to feel the way they need to feel. I will likely 'trash' the comment if it is not edited, so that it doesn't leave other people feeling the way I do after reading it. I have accepted my disease, and worked very hard to do so from a professional perspective, so I also don't appreciate your thoughts and statement on saying that I have not accepted it.
I wish you well in your journey with IPF, and am grateful that you took the time to read my column. However, please be mindful that everyone has the right to cope the best way for them and it may not be as 'black and white' or clear for them as it seems to be for you. Kudos to you for your strength.
ash
I think people who are diagnosed with a chronic illness do realize that they should have spent any time outside of professional work doing things they love the most - and still want to do so, but body lets them down. For those who are not dogged by chronic illness, It's not important to be busy, it's important to spend more time doing things one is passionate about. I think not everyone is born with this wisdom, some acquire this wisdom because they end up in a profession they end up loving, or their upbringing is such that they know what they want to do that which they love etc. These people don't focus on material acquisitions, they do things that are immersive and give them a content life. Of course there is going to be some resentment towards those who are 'abled-bodied' and who are busy doing things not relevant to their happiness - but I think, in the end one can only change oneself.
ash
I also want to add there are treatments on the horizon, and one can hope that something comes of them where this disease can be reversed. Something soon. Reversal is the key, and then keeping scaring at bay once.
Lea
An interesting point about chronic illness is that it brings out fears in people, sufferers and friends. Does "I'm so busy" mean busy or feel guilty? What major need in life has the person neglected?
George Clayton
Charlene
Thank you so much for your column. I have been greatly helped by your candor and knowledge.
As my disease progresses I am learning some surprising things, some things about those people who are as we once were...healthy and some things about me. Much is about perspective and how it changes as things in my life change.
Over the past few months, I have declined a bit as I am learning about how my body reacts to my med, Rituxan and the infusion timing, it appears to be helping overall.
I have my group of specialists. I call them all my "Oligists" you know, Rheumatologist, Haematologist, Pulminologist, Urologist, Gastroenterologist, etc. etc. As you know they each want all their tests prior to each appointment along with a gallon of blood each week! All of which made my last several months really, really hectic. Toss in a lot of snow and a Christmas Holiday.Soooo I pulled back on everything, stepped back and focused on taking care of myself and my perspective.
It was after I pulled back and focused on me a bit that I really noticed that people ...me included, are so busy that many times we are just careening through our life of schedules as the treadmill speeds up. I reflected that much like empty calories don't help us, many of the pressures we all unnecessarily accept are also empty, knee-jerk obligations that our consumer mindset makes us think we need. I would guess that 40% of those obligations could be stopped immediately with no negative effects and, a much better perspective. Perspective... everything changes as your perspective changes.
My illness changed my perspective and how I view what is and is not important. Im 70...I wish I had learned that long ago.
As my disease progresses from diagnosis 12/16 to now I have also learned some things about myself.
At least for me, it took a couple of fatal diseases to wake me up...my perspective changed.
-I did not know I was this strong. My perspective changed.
-I couldn't imagine having to cope with the knowledge that I have a fatal disease with an expiration date. I have educated myself about my diseases and while Im not quite pleased with the process, I am comfortable with the knowledge and not afraid at all. My Perspective changed,
(Im a Christian and know where Im going).
-I expected to feel angry and to feel sorry for myself. Instead, I am ok with it and feel sorrow for my family as they are the ones suffering this loss and all the emotions that involves. My perspective changed
When it was my time, I thought it would be better to go in my sleep without warning (It appears that ain't gonna happen), I now appreciate having this opportunity to spend more Quality Time with my family and them having the time with me. My perspective changed.
I have always been a hard driving type A businessman. Having a disease that can attack so many areas of your body changed my perspective. My heart has been softened, I now better understand others physical and emotional challenges. I always understood empathy for others... now I feel it at my core. My perspective changed.
IPF is a horrible disease. It robs us and robs those who love us. We all have those woulda, coulda, shoda regrets. I will not let my remaining time be stolen by regrets from the past or the unfairness of this disease. I am focusing on the capturing positives in life situations, and people.
My Perspective Has Changed.
Judi Zoboli
Oh, my dear, there are plenty of us out here who feel as you described. I especially felt it during this past Holiday Season...everyone going shopping, cooking, baking, going to parties, wrapping gifts, trimming trees...the list is endless. I've done none of it and began to feel two things...sad at what used to be and happy I didn't have to do all these things...couldn't, actually. I've been dealing with a very slow acting IPF since 2005 when I was diagnosed and told I had 2 years. I've proven them wrong, but at what expense? Certainly not at a quality life, and I've grown weary of thinking of it that way. I simply do what I can and try very hard not to feel left out of activities. So much more to say, but won't at this writing. Hugs and try not to try to understand...just be.
Sue
I am in my 70s so my perspective is much different than yours. I would suggest that having to slow down gives you the time and space to become the person you are meant to be. Too often we lose track of ourselves in the busy-ness of daily life. Finding and settling into the core of your being is a gift many people never find. Take advantage of it as you wait for a transplant or new therapies. There is peace in this process.
Judy Jacobs
I am still really busy..at 74 I still have to work 20 hrs./week, which I rather enjoy. I do not use O2 in the daytime, only at night to deal not with sleep apnea, but an inability to breathe deep enough while sleeping, so my sats. dip into the 60's 10% of the time.
I do wish I had more time and money to do the things I love, but I know that God has it all planned out so that I can still make more of a contribution to this world before I leave it... sometimes it is just giving someone a smile or encouraging word.
Perhaps all I really want out of life is to pass on toothers the message that the only thing that counts for ANYthing in this life is helping others through the quagmires.
Katherine L. Broach
It is enough for me to know my busy children with their busy jobs and children events will drop everything if the situation demands. Meantime I like to do what I can for as long as I can. I have the advantage of a helper 2 hrs a week and it is she and she alone who saves me from assisted living. Taking in an abandoned cat has saved me from myself and it's clear who rescued whom. Approaching 80, my sympathy is for the younger folks with IPF and so much life to live. I'm right with you all praying for a cure before one of my young family members might be diagnosed.
Nancy
Dear Charlene,
I have read your thoughtful column several times and can empathize with your sensitivity and feelings. My husband was diagnosed with IPF about 4 years ago and after a particularly bad infection and hospitalization this time last year he is now on oxygen 24/7. Where we were playing golf twice a week it is now an effort for him to do daily exercises or walk down the street. We are working on getting him stronger. I am in my early 70's and he will be 80 next year so am sure we are much much older than you. Fortunately I retired a couple of years ago so I am available to really be his "Caregiver".
The gambit of emotions we have experienced this past year are those one truly cannot understand if one is not personally affected by this disease or are the caregiver to someone you love who is. My thoughts are from a Caregiver perspective.
I think that all your feelings expressed are very natural. You were a very active woman..socially and physically involved in projects and Clubs...always running..Then suddenly your life did a 360...
I would imagine your focus has now been on yourself and your health and your recovery from a very brave transplant--as it should be.
When you speak to your friends and they say they are so so so busy of course you will remember when that used to be you too and you realize that is no longer your reality. A wistfulness/sadness is understandable but now you have the perspective to realize there is so much more precious in life than being busy busy busy (???) which seems to be the stock answer from many people. Perhaps you fear that your friends and family who are running, busy, stressed don't realize how it will affect their health. All you can really do is remind them to stop and smell the roses.
There will be those few people--friends or family--that will make a point of fitting you into their schedule for the pure purpose of uplifting you and to show their love and support for you.
Warm wishes for a continued recovery.
Trevor Hayes
We are our own worst enemy. Those that are unnecessarily busy and those that feel guilty when they are not. Seems to me this is also a disease. Unless one is literally a captured slave essentially everything in life boils down to a choice. If we have enough mindfulness, self awareness and self control we can even decide if we want to get angry or not. Action and automatic reaction is not the mode of a self aware person.
JUDY KRASOVEC
I have always enjoyed your comments and I have been helped with them. I told a friend that I felt like I had died and didn't get to go to my own funeral. She thought that was stupid. BUT 2days before I ended up in hospital, I was cleaning my mile of the river walk, laying stepping stone , taking care of everyone else. After a month in the hospital I me home a different person. NEVER TO SEE MY OLD SELF AGAIN AND I MOURNED THAT.
Katie Broach
I am grateful to the people who just let me BE instead of thinking i should be DOing as they are. I have always been a BE-er, if given the choice. Too much of doing is justifying one's existence. Approaching 80 and in my 5th year with this disease, I just appreciate the folks who don't push me to do more than I'm comfortable doing, thinking they are helping me build stamina (NOT), etc. God bless the people who just accept and meet us where we are in this journey. Fortunately I have some people dear to me who need nothing more from me than an ear from time to time so I still feel of value to others. There was a time I felt I could no longer meet my grown childrens' expectations, and I realize their only expectation at this point is that I take as good care of myself as possible and do the things I can do comfortably for as long as I can. I sleep late and still need a nap. With such fatigue, I'm relieved I've nothing left to prove. If I have three good days in a row, I can just about count on at least that many bad days just wiped out will follow. I know this disease is easier to accept for those of us who are older. I praise God for my earlier years and the energy to work full time and be a single parent to my three children. When I told one son that I'm not the girl I used to be, he replied that it's good I started with more than most then. God help us all to be gentle with ourselves.