The Reasons I Socially Isolate Myself
Idiopathic pulmonary fibrosis (IPF) is a cruel disease. Characterized by progressive scarring in the lungs that prevents oxygenation, IPF slowly steals a patient’s ability to breathe. There is no cure for IPF, and the only approved medications to slow the development of lung fibrosis are Ofev (nintedanib) and Esbriet (pirfenidone). The disease’s damage is more than just physical. IPF also causes emotional turmoil, cognitive difficulties, and can be socially isolating.
I’ve been quite ill since November. The only positive from this setback is that it has provided topics for my columns. While I am improving physically, the emotional and social implications of IPF are becoming my reality. I have isolated myself from friends. This has been a painful realization, as I have always enjoyed socializing.
I’ve been looking for answers as to why I am choosing to socially isolate myself. Not too long ago, someone challenged me to go outside of my comfort zone and invite over a friend who had been asking to get together since I came home from the hospital. Until I considered his point of view, I’d been isolating myself based on my own needs. But sometimes we have to consider the needs of our friends and family.
When my friend came over, I realized that he had been scared of losing me. In the future, I will keep in mind my friends’ feelings when I choose to socially isolate myself. I also want friends to know why I have these seasons of solitude.
The following situations can make patients uncomfortable and want to socially isolate themselves:
- Fatigue: Visiting with friends and carrying on a conversation can be tiring. As I continue to recover, I find my mental stamina has diminished. It is embarrassing because sitting and talking with friends shouldn’t be tiring. Instead of facing that embarrassment, I have avoided having friends over.
- Comparing yourself to the “old” you: When I was growing up, I was surrounded by communities vastly different from the ones I have now. I was active as a child, participating in sports or volunteer projects. I loved being busy, and I loved the social aspect of engaging with multiple communities. Since my IPF diagnosis, I’ve had to give up many of those communities — such as sports teams — and I still grieve those losses. I will never be the same as I was before IPF came into my life, but sometimes social situations can prompt comparisons to the old me.
- Managing germs: Large crowds provide an ideal environment for germs to spread, and avoiding unnecessary exposure is important for patients living with IPF. Sadly, I’ve often chosen to socially isolate myself out of fear of getting sick.
- Changes in physical abilities: It is hard to maintain friendships when my physical abilities are diminishing. I am lucky that my friends still invite me to events involving physical activity. I always have the option to decline, but at least I feel included. I don’t always want to admit that I can’t do certain things anymore because of this disease, so I turn down the social invitations.
- Talking about the hard stuff: We all need that one friend who knows us inside out. We can try to hide something that is bothersome to us, but that friend sees right through it. That friend is there for the tough conversations. But sometimes I don’t want to have that conversation and I socially isolate myself.
How has IPF/PF been socially isolating to you? Let us know in the comments below.
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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
Cynthia R Chase
I had to drop out of our church choir. I really miss it. We sang challenging music and our choir had (still has) several professional-level members who really helped the rest of us to grow musically and rise to new challenges. Choir practice was always a lot of fun--lots of hard work interspersed with laughter.
Charlene Marshall
Hi Cynthia,
Thanks so much for reading my columns and reaching out via comments. That said, so sorry to hear you can resonate with the socially isolating aspects of this disease. It can be awful! Losing your choir community must have been tough, I wonder if there is a way for you to be involved in a different capacity with this same group? Maintaining our friendships and communities is so important with IPF. Hope you find some peace with your new normal, it sure is tough.
Charlene.
Hans Fink
Hello Cynthia & Charlene,
Sorry to hear that you had to leave the Choir. Like you, I love singing in a Choir & despite my IPF I decided to continue with my Church Choir & also re-joined our local Symphony Chorus which is quite demanding. It is more challenging now with IPF, but I thought that as long as I can breathe, why not enjoy myself. As Charlene mentions, social interactions are uplifting & being in a group with other enthusiastic lovers of music makes one focus on other things away from IPF. Of course with activities such as this I do not have the same breathing abilities as prior to IPF, but manage.
Besides this, I refuse to let IPF limit me & continue with weekly dancing, mind you not as vigorously as prior to IPF. Again, this gets us back into social contact with like-minded dancers & shifting focus away from my limitations. This forum really helps by hearing from others & their daily struggles with IPF & what I find very helpful how to deal with the side effects of the medication we have to take. I learned so much from other patients by trying different methods to control these effects. My sincere thanks to all for sharing their experiences.
Keep positive.
Charlene Marshall
Hi Hans,
Thank you so much for reading my column and reaching out via the comments. I am so appreciative of everyone's willingness to share their story - we're so much better working together! I'm glad you are still managing to participate in things that make you happy, even though it may look different than it did before you were diagnosed with IPF. Thank you so much for sharing - there is a lot of positivity in your note, and I know that is so important for many of us. Kudos to you Hans!
Warm regards,
Charlene.
Holly W Patient
Charlene, as a post-transplant person, I can relate to your column as I recall my own isolation, which centered around my hiking friends. I didn't have a diagnosis because I didn't go to the doctor for at least a year, or more, as my shortness of breath and fatigue increased. I thought it was due to being out of shape and overweight, and aging. I would decline invitations and make excuses not to join in, not wanting to hold people up or perhaps get into a situation where I required help. It was a terrible feeling with a lot of guilt associated. Once I had a diagnosis of ILD, the guilt was replaced by depression. All the negative emotions are valid and understandable, and all I can say,from my present perspective, is that there is hope and a fine future ahead, and that future is transplant.
Charlene Marshall
Hi Holly,
Thanks so much for reading my column - as always, it is lovely to hear from you! Sorry to hear you can relate to this topic, as it is a tough one, but I do find comfort when others share similar experiences with me. We don't intend to socially isolate ourselves, but like you mentioned, it is so easy to overlook the symptoms of this disease as just being out of shape, etc. I was more angry at myself for no longer being able to participate, that I just chose to socially isolate myself. As we know, there was a very valid reason for this, and no wonder you couldn't hike anymore either. The guilt replaced by depression resonates with me too. I look forward to breathing freely with the ultimate gift :) Thanks for writing and hope you continue to do well!
Charlene.
colin
I have been suffering with IPF for some years now . It really is
not easy to come to terms with the isolation it brings. I do my best to stay positive. Tts a battle fighting fatigue , also my confidence suffered greatly especially in social situations . I find the side effects of medication so hard to cope with at times. I gave up on seeing people, friends etc but I found its best to be determined and NEVER give in to giving up on enjoying your life as much as you can. Thanks Charlene for being able to write on your column and Thanks to everyone for their continued positive input , it helps me so much hearing other suffers experiences and makes me feel less isolated an alone .
colin
Charlene Marshall
Hi Colin,
Thanks for writing, although so sorry to hear you can resonate with the social isolation this disease brings. It is one of the toughest parts of living with IPF, I'd say! Your closest friends will understand your needs, including medication side effects, I learnt that since being diagnosed with IPF, as long as you're transparent and open with them. That is hard too, I remember it well. Hang in there, and feel free to write anytime - you're right, hearing from others helps us feel less alone. We're here for you!
Charlene.
M C Butler
I live in the UK and have enjoyed your forum for some time. Before I say more I’d like to see if you receive this......
Charlene Marshall
Good Morning,
Thank yo so much for reading my columns and reaching out via the comments. Welcome! I am happy to confirm that I've received your note, I hope you get this in return. I look forward to hearing from you more.
Charlene.
kim
Charlene i just came across you're blog.please do not feel guilty for adapting you're life to a way that is comfortable for you.Most people are not considerate or intelligent enough to understand a persons health condition unless they experience themselves which is sad.They think "well if I feel good then everybody else must be ok too" My husband has severe emphysema and pulmonary hypertension for years now and i still can not get people to understand he needs me at home.He can barely get through a day without my help.Yet people want my time,attention,and help.Ive had to just be blunt with them.You just live you're life in a way thats most comfortable for you and keep the friends that are sensible and accomadating about you're condition.I hope you are hanging in there and finding some happiness in youre daily life.even if it's mostly at home.
Charlene Marshall
Hi Kim,
Thank you so much for reading my columns and reaching out via the comments - it is so nice to hear from everyone! I appreciate your kind words about adapting to an entirely new life since my diagnosis. You're right, most people just can't (or don't try to) understand what it is like to live with a chronic illness. Imagine how much more compassionate the world would be if we all just tried to do that a little better? Sorry to hear about having to divide your attention and time, but glad you were blunt with the people taking those things away from your husband. Sounds like you're an amazing caregiver! Thanks again for writing, feel free to connect anytime and stay safe. Best wishes to you and your husband!
Charlene.