The symptoms of chronic illness include social difficulties, too
How IPF has made me out of step with my generation, and tougher to talk with
Idiopathic pulmonary fibrosis (IPF) is a complex disease that leads me and other patients on a complicated trajectory. Not only do I deal with its physical difficulties, such as acute exacerbations and oxygen dependency, but I also wrestle with its emotional and social complexities.
Since being diagnosed with IPF in the spring of 2016, I’ve most struggled with the fact that it’s an invisible illness. Unless I’m wearing my supplemental oxygen, no one knows how well or poorly I’m feeling. Since IPF is progressive, though, patients will eventually become dependent on oxygen or listed for lung transplantation, both of which are more visible. Until that point, it’s hard to know whether someone is dealing with a lung disease like IPF.
IPF becomes all-consuming as it worsens. Regardless of the other priorities on my plate, this disease will demand more time and attention. Whether the fatigue I feel is from managing the disease or the disease progression, daily activities become exhausting and hard to manage.
And sometimes there’s little time left to do things unrelated to the disease. With taking medications at proper time intervals, managing side effects, scheduling and attending medical appointments, and resting, my capacity for anything else is limited. What’s left often goes to work, and chronic illnesses add expenses.
The physical leads to the social
Because of all of this, conversations with others can become quite narrow. I can talk about my disease and its implications for hours, but the topic isn’t particularly enjoyable for my listeners. The same thing goes for work; most of my friends, thankfully, are interested in the promotion I got last year and how my new role is going, but that subject can only last so long, too. So where does that leave me? As you might imagine, it makes conversing in social situations difficult.
My chronic illness also prevents me from achieving milestones that my peers are having. For my age, young adulthood, these typically include engagements, weddings, and starting a family. Even if IPF weren’t part of my life, I’m not sure I would’ve achieved them; I was never sure parenthood was for me, for instance. I can say with confidence, though, that if IPF weren’t part of my life, I’d have a lot more to talk about with friends, such as travel, sport competitions, or hobbies.
I’m blessed to have a network of great friends who support me despite IPF and who are always willing to listen. I’m not complaining about them; I’m just frustrated with the social ramifications of this disease.
It’s easy for others to understand the physical and perhaps emotional difficulties of a disease like IPF, but it’s important to talk about the social implications as well. I was recently listening to a podcast on young adulthood, which argued that this generation is particularly problematic for sustaining friendships because everyone in it is at different stages. But chronic illness makes that dynamic even more challenging.
When I started writing this column a little over seven years ago, I vowed to capture all aspects of living with IPF. That includes the difficulties of socializing while grappling with everything else.
How has IPF affected your social life? Please share in the comments below. I’d love to hear from you!
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
Judith
I am newly diagnosed with IPF at age 76. Just this week I told my sewing buddies that I would have to take a break from the group until I figured out how I would deal with the stairs where we meet. But, today I told one of them that I would be back as soon as I can because I need the socialization! I hope you have some interests that you too can take part in. Don’t let this isolate you! 🙏
Brooks Reid Brown
Hello Judith
I was living with a chronic cough and not aware of having IPF or ILD or what underlying symptoms made me cough. I was working full time at my family’s second generation travel agency in the Virgin Islands -1973-2018. I Was living in Paradise and not focusing on me or my coughing as much as my Job! I loved my job and how making tourists happy was and could be fun!!
It wasn’t until I retired and left the VI’s (2018) to move to Aiken SC that my health issues said “stop” worrying about everyone else and start listening to your body!!
Luckily now being in the US I was able to see a wider spectrum of specialist doctors who eventually diagnosed me with having interstitial lung disease and is currently better known as IPF. It wasn’t until November 2022 when I was directed and able to meet with pulmonary care doctors who are willingly working on helping me through this as best they can’n
Trying to remain positive and socially involved was always my raison d’être!! It’s definitely who I was!!
Now my breathlessness rules and I hesitate more often than not!!
Btw I had to stop taking OFEV as the side effects were not good to say the least!! As I told my pulmonologist I love watching horses trot at the Aiken Training Track I just can’t handle it when I do!!
I’m 72 years old, single, living with many close friends near by and three loving sisters in Florida whom I’d love to see! But currently cannot find the energy to do!
I sleep with “Oscar” oxygen at night and take portable “Pete” oxygen whenever I need extra help on the go!! It’s not what I’d dreamed of doing in my retirement years but I’m glad to be alive!! Thanks for this forum indeed!!
Ellen Macko
Well shared , Charlene. I retired nearly 4 years ago and gradually since that time I find less to talk about even with family. I am glad I am not the only one feeling that way.
Regina Bolyard
I am early into my 6th decade of life and was diagnosed with IPF about three years ago. Just months before my diagnosis I lost a friend (whom I will call John) to IPF. He was 20 years older than me. I didn’t know what he succumbed to until shortly after I was diagnosed. All I knew was what I could observe: John had difficulty speaking more than a few words without stopping to catch his breath. I only learned from his wife (after his passing) that he used supplemental oxygen. He never used it in the social settings I was included in. He never spoke about his illness in my company. Others in our circle of friends may have know something of it, but probably only those he was very close with.
My early experience with socializing after diagnosis involved skepticism about my illness. For years I had been increasingly sensitive to chemical odors including fragrances. I had a terrible cough for years. I didn’t have to speak up much about it because another close friend had complicated asthma and I was able to stay in her wake. She was very outspoken about her issues and is somewhat formidable. But she moved away and I was on my own to deal with my respiratory problems. My efforts to advocate for myself in her absence were sometimes met with eye-rolls. To make matters more complicated, I didn’t know the reason for my issues. But triggers would cause heavy mucus secretions and worsening cough and crushing fatigue. I did not know that I had (have) co-occurring asthma. I also have traction bronchiectasis due to the IPF.
Not long after my diagnosis (following lung biopsy and ILD MDC), a friend asked what was wrong with me. I told him IPF. He had the poor social grace to ask if I was actually diagnosed by a real doctor (as opposed to doctor Google I presume). Nothing about me would give cause for a reasonable person to question my truthfulness. That affront was a real blow to my dignity, even though it probably wasn’t meant to be. He had been closer to John than to me, being one of the guys, and I suppose he thought I was jumping to conclusions. Sadly, his reaction to me speaking candidly about having IPF is far from unique. I LOOK healthy. I’m not on supplemental oxygen. And I don’t talk about my health unless it’s necessary to advocate for myself. But I am in significant discomfort most of the time. Social settings are fraught with triggers and I avoid them most of the time when they are indoors. I am becoming unfairly regarded as unsociable because people don’t know about or don’t understand what I’m dealing with. Measures to contain Covid helped me avoid confronting this for a time. Now it’s front and center in my social life.
The success with which my friend John was able to conceal his IPF is impressive. He was an active outdoorsman and worked in a construction trade he enjoyed right up to the exacerbation that took his life. He didn’t need any assistance other than what his large immediate family could provide. I’m sure he didn’t want pity or to burden others with his problem. I do not have a family who are able to support me in the way his did for him. I live alone and my friends are much like family. The bad experiences when I have shared my problems due to IPF has shaken my confidence in my friendly connections. The limitations of the disease are bad enough. And the emotional weight of coping with an incurable terminal disease can sometimes be burdensome. But to have it also become a source of shame and isolation is crushing.
For anyone else dealing with a similar situation, I hope you know that someone else understands.
Nickolas Boosalis
I was diagnosed with IPF 4 years ago first with an X-ray then a CT scan.I was prescribe Pirfenidone,Esbriet and have been on it for close to 4 years and tolerating it well.Got a new CT scan a couple of weeks ago and my Fibrosis has progressed more than my Pulmonologist hoped for.He said maybe I would respond better to Ofev being the drug has a different chemical makeup ,he’s not sure. Have you heard of this being a thing that might make a difference? I guess there’s know way of knowing without just trying.I don’t want to make it worse but what have I got to loose.We are going to revisit this after another CT scan in 5 months and then make a decision to switch or not. If you have any thoughts it would be appreciated. Thank You,Nickolas Boosalis
Steve Dragoo
Hi Charlene - To sum up how IPF 7 years in affects me in one phrase: I live in a box. Mostly because it is so hot here and language barriers sometimes prevent me from engaging like I want to. Hopefully, I will have some joyful time if/when we get stateside as that is a very very long flight with no O2. I keep looking at supplements and some help more than others and recently I have been able to walk our stairs up to 50 times in a day but mostly around 25 - 40 and that really helps. Of course, I work on my Spiritual walk daily for there is true peace regardless of how my body feels.
If we get stateside, I have many things planned engaging with various churches and working on their nurturing skills to help keep new members more active and belonging.
SteveD
Charlene Marshall
Hi Steve,
I think of you often and wonder how you're doing! I would imagine the goal of getting back stateside is probably hard, with the need to fly and no 02. The doctors won't prescribe this to you for a flight? I think I'd be afraid to fly that long without 02 as well. Sorry to hear you feel you're in a box, that is so challenging and this disease is so cruel. Hang in there and hopefully you'll be back stateside soon.
Charlene
Kathryn Maguie
Thank you Ms. Marshall for broaching this subject. I have been thinking the same thing for months now. It is so hard to explain what this is like as I look pretty good for the most part. ( There are those days)
Going someplace I equate to taking a new baby out to visit friends and I would have to remember EVERYTHING! Diapers, wipes, a new set of clothes or two if there was an accident, formula, special blanket or stuffy, bouncy chair or carriage, my purse, binky, Etc.etc. etc. it was overwhelming but I did it.
Now it's how much O2 I have in a tank, how long I'll be at the social event, does anybody have a virus, do I need my rollator, or can I use my Inogen, will I be able to get protein to take my meds, Don't forget a protein bar, don't forget my meds, bring a mask or 2 just in case someone coughs or sneezes, how many stairs are there and how far do I walk before I can sit, ( I'll need my rollator) will there be a place for me to sit , don't forget my oximeter to monitor my numbers when I just don't feel right. What happens if I am so tired I need to be the first to leave, I hate attention being brought to me. What do I talk about with others please not my disease. Is it worth going?
I used to love having a place to go and things to do; but life is different now and I try with gratitude to make the most of each and everyday.
I have a lot of friends that come to visit me now because stairs are just to much, I make a simple lunch or snack or they bring something; it's working well, we discuss all events and it's just a check in on how I'm doing, not an extended focus on this awful disease.
Brooks Reid Brown
I’m a 72 yr old single woman who worked 45+yrs in my family’s second generation travel business in the USVirginIslands. I always had a chronic cough but was never diagnosed with anything more than Gerds and constant sinus congestion.
It wasn’t until I retired and moved to Aiken SC in 2018. The cough continued however I was better able to see a wider range of medical
Doctors who in 2021 diagnosed me with ILD and then told me in November 2022 that it was IPF.
Mostly relieved to know what was causing the cough and subsequent breathlessness I was on a different path.
I unsuccessfully tried 150mg x2 a day and had to lower the dosage to 100mg again 2x a day. Side effects were too much to bear..
As I told my wonderful pulmonologist I enjoy watching Horses trotting at the Steeplechase Spring and Fall events in AikenSC I just don’t like it when I do. I stopped taking it and now sleep with oxygen
and use a portable one when going out in the heat or doing anything more strenuous! Physical therapy was great but then insurance only covers X amount of sessions.. My overall mental attitude is good days with slow sleepy ones! I push myself as often as I can but am frustrated knowing there is no cure -YET
I do take Zinc picolinate, cough drops and try to research online!!
I see the doctor in August for new tests and check up!!
I surely didn’t see my retirement as being stuck with a disease that eventually would could wear me down! I’m only 72 and want to do so much more!! Thanks for listening!! Brooks Brown
Terri Gordy
Hi Charlene, thanks for sharing your story and inviting others to share theirs. I was diagnosed a year ago with ILD, which my doctors believe is caused by my autoimmune disease, Sjogrens. I'm on CellCept, so I am immunosuppressed, and I also take OFEV, both of which greatly limit my social life. I use supplemental oxygen only when I exercise. I use a wheelchair to get to/from medical appointments sometimes, and I have a handicapped placard for my car. I did pulmonary rehab for a while and really enjoyed the social aspect of it, but fatigue got to me and made it impossible to continue. I no longer attend inside events like concerts, cinema, live theatre, etc., all of which I dearly miss. I’m shopping for a mobility scooter that will hopefully make it possible for me and my husband to attend outdoor events like fairs and festivals and get around better on vacations.
I’m 60 and still work full-time from home, and my husband also works full-time. He is a huge support to me, but I worry that I rely on him too much. And though he’s a great listener and very patient, I’m sure he gets tired of me hearing me complain about my health. I know what you mean, Charlene, about juggling work and all the things that come with managing a chronic illness, not to mention exercise when I feel like it, laundry, housework, pet care, etc. All those things don’t leave much energy, or even really desire, to socialize. I get together now and then with individual friends who know about my health for a meal or a visit, but few people outside of my family and a handful of friends know everything. I don’t like to be the focus of attention, nor do I care to hear other people’s unsolicited advice on what I should do.
Life Brooks, I never thought my later years would go like this.