Navigating the Complexities of Chronic Illness and Friendship
A little understanding goes a long way in relationships when illness is involved
Living with a chronic illness can be a lonely experience. It feels isolating because it’s difficult for my peers, who are in their mid-30s, to understand what life with an invisible, yet debilitating, illness is like. While I’m glad they don’t have to experience that, it can be hard to navigate the intricacies of friendship.
That’s why I’m grateful for BioNews, the parent company of this website, and my fellow columnists, who are also chronic illness patients, caregivers, and forum moderators for our various disease communities. It feels less isolating to have a group of peers who understand the struggles of life with a chronic illness.
Their support takes various forms, such as reminding me of the importance of self-compassion as my illness causes physical changes to my body and prohibits me from doing everything I did before becoming ill. Other times, they offer tips on managing the side effects of medications or advice on navigating life with supplemental oxygen. Regardless, it’s important to have people who truly understand my situation, which makes me feel less alone.
Protecting my health is crucial
I was diagnosed with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive illness, in 2016. The direction of my life has changed many times since then, and my friends and family try to be there for me the best they can.
Back in 2017, in my early days of living with IPF, I wrote a column about feeling guilty because I’m immunocompromised. But I quickly rid myself of that guilt and started advocating for the importance of avoiding others who are sick. This included asking people not to come to my home if they feel unwell.
Fast forward to this past Christmastime, which also happens to be the cold and flu season. Unfortunately, during a gift exchange, some friends were experiencing a mild sore throat, cough, and congestion. Due to having compromised lungs, a minor respiratory virus could be detrimental to my health, so we collectively decided to reschedule the get-together. I was worried my friends would be disappointed, but the risk was simply too great to take.
Why I test
The COVID-19 pandemic has been a scary time for me and others living with chronic respiratory conditions. If I’m feeling unwell, I’ll immediately take a COVID-19 test. It’s a proactive measure to ensure that I seek proper treatment if I catch the virus again. (I’ve already had it once.)
It’s no secret that people have opposing views about the COVID-19 virus, even among family members and friends. Recently, I’ve heard people comment about the effectiveness of rapid home tests, and that some people are too sensitive about testing. While I understand that perspective, I don’t believe I’m being paranoid about COVID-19 testing, nor do I think I’m overtesting. This virus could have severe short- and long-term consequences for me, so I want to know as soon as possible if I’ve been exposed.
Why I’m adamant about scheduling
If you’ve read my past columns, you’ll know that I love to travel, despite living with a life-threatening lung disease. While traveling, it’s not uncommon for schedules to be disrupted. Mealtimes change from when we’re at home, as does the type of food we eat, and bedtimes.
Due to IPF, I must take certain medications at the same time every day. To minimize the gastrointestinal side effects of one medication, Ofev (nintedanib), for example, I find it helpful to take it with protein and a glass of water. This means that I have to keep a schedule, even while traveling. Sometimes that’s inconvenient for friends I am traveling with.
I hope all of this helps to explain some of the intricacies I navigate while living with IPF. I deeply appreciate the efforts of friends and family to support me. I am truly grateful.
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
Rand O'Brien
Once again, Charlene, thank you forthe straight-up information and your own experience. Thank you for your honesty, courage and example.
Peace, Rand O'Brien
Nan Clarke
Hi Charlene,
I was diagnosed with IPF in April 2019. It first made its debut after a surgery I had in 2015 when my oxygen plummeted to 72 or 74 after I was back to my room. I have no idea how low it got in recovery, but it got low because the race was on to figure out what was going on. They could not truly establish that it was IPF but upon reading some of the reports it was clear they checked that ou in the process. They got my oxygen back up and when it was 94 two + weeks later they sent me home without oxygen. In 2018 I took an arduous trip by myself to Israel in a Ach! That was rough! I too love to travel. Anyways I had a lot of issues. Come April 2019 I was diagnosed. InterstitialLung Disease, specifically IPF. I am 70 now. I turn 71 in April. I am on oxygen when I exert myself. I am also taking Pirfenidone which is the generic of Esbriet. Started out on OFEV but couldn’t get my digestion regulated. Such fun! Please write back. Would love to have someone to chat with that is also interested in travel. I want to get back to it but don’t know if that is practical. I am doing it anyways. Life is for living and breathing. Covid has really been a “joy” …Not! Have not caught it. Have you. nan.
Randall Thornton
Hello Charlene. In this talk about travel, I am really hoping to make a trip back to my home were I grew up. I also have a major heart problem. I see both my hear and lung doctor about every 6 months unless something comes up. Well, my question is this. Using an InoGen is not working anymore. It doesn't put out enough anymore. I need a solid 5 or more if I'm doing anything. I have been working with the oxygen cylinders this past week to see how they will work and for how long they will last. On 5, I just get 2 hours. Haven't tried any higher number. The trip we are hoping to take is 2000 miles round trip. It's in the heartland and only 1 Lincare supplier the whole way. How do you do trips? What do you use for refill you tanks? I really want to take this trip to visit the graves of my folks and grandparents and visit old friends. Any suggestion would be appreciated.
Jan Busch
Since my diagnosis I have lost 1/2 my friends. They simply don’t want to deal with the prognosis of this disease. Maybe they are reminded of their own mortality? A friend with terminal cancer experienced the same “ghosting”. With my 2 BFFs both gone (Covid & cancer) I’ve had to get used to some unwelcome isolation. None of this was expected. It’s hard enough to deal with this disease.