The Benefit of Having Friends with Chronic Illness
No one wants to be plagued with the symptoms, medications, management, or label of living with a chronic illness. For most, a diagnosis of a life-threatening illness such as idiopathic pulmonary fibrosis (IPF) can be an extremely emotional, confusing, and scary time.
I remember this vividly when I was diagnosed with IPF in April 2016. Not only did I experience all the emotions, confusion, and fear that went along with being diagnosed with a rare disease at 28, I also felt extremely socially isolated.
While I am lucky my family and friends have rallied around me over the past two years while I learn to live with IPF, there is something special about befriending others who also have a chronic illness. Of course, I am sad when people I meet, or even those I have known for a long time, disclose their illnesses, but in a way, I also feel a sense of relief. The best friendships are built and sustained on shared interests and invested understanding in what each person values or holds important.
When someone knows what it is like to live with a chronic illness daily, a friendship feels almost instantaneously strengthened. This type of friendship brings an understanding that often does not exist with other people regardless of how hard they try.
With friends who also have a chronic illness, the benefits are two-fold. Not only do they understand the physical difficulty of constantly living with a chronic illness, they also understand the social and emotional implications.
Following are some benefits that come with having friends who also live with a chronic illness:
They understand physical limitations.
Living with any chronic illness is exhausting. This doesn’t just apply to those of us living with IPF or another type of lung disease. Other friends who have a chronic illness intrinsically understand this, and as a result, they are prepared to adjust plans accordingly. Not only are other patients with a chronic illness aware that plans are never carved in stone, they also are prepared to spend time with you doing whatever it is our bodies will physically allow that day. To have someone understand this is incredibly comforting, as it eliminates the pressure of doing something physically taxing while spending time together.
They understand the importance of social flexibility.
Having to cancel plans on friends last-minute due to how my lungs are fairing has been one of the hardest things about living with IPF. When making social plans with another friend who has a chronic illness, a pre-existing understanding means that social plans may end up being canceled at the last minute. This is very appreciated.
Awareness of germ risk and exposure.
Having to disclose that you prefer to avoid social events or areas with large groups of people (malls, cinemas, etc.) due to germ exposure is uncomfortable. This is usually important to friends who have a chronic illness, too, so plans can be made to avoid areas where the risk of germ exposure is high without having to ask.
They understand the importance of alone time.
As a result of having IPF, I usually need time alone — not only to rest my body but also my mind, as I find I can become over-stimulated quickly. Other friends who are living with a chronic illness experience this as well, and also appreciate alone or quiet time away from crowds. It is nice to be able to spend time with friends who are just as happy doing a quiet activity together as they would be going to a large event. Some of my closest friends and I call this “turtling,” which is the idea that I just need to hide inside my shell and be alone for a little while to rest and rejuvenate.
They understand the emotional toll of living with a chronic illness.
This is probably the biggest benefit to having other friends with a chronic illness. Regardless of what the illness is, being sick can be emotionally exhausting and can feel like no one else understands. Sometimes when others ask me what is wrong and I disclose that I am unsure, they are a bit confused why. This confusion doesn’t exist when my friends who also live with a chronic illness ask, which certainly is appreciated.
While I am thankful for the support of all my friends, family members, and colleagues, I am particularly thankful for having a small group of friends who intrinsically understand what it is like to live with a chronic illness.
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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
Gisele Lapointe
I have been reading the many comments of people being diagnosed with IPF, or having lived with IPF for a while and how they are coping. While IPF is said to be idiopathic, meaning nobody knows the real cause of the disease as it differs from patient to patient, but we are not sure. I am struck by the fact that few people question the cause of their own disease, was it due to smoking or to living in an unhealthy environment or having inhaled noxious fumes or is it familial, etc.?
As for me, having been diagnosed with IPF 5 years ago at the age of 77, I kept wondering how I had gotten it and I had no answers. I reviewed my past lifestyle, having lived in Los Angeles in the sixties when pollution was pretty bad to the point that I would feel a burning sensation whenever I inhaled. I had never smoked but my husband did though he had stopped in his forties. What is second-hand smoke? What it wood dust as I had once done some woodworking in a closed environment? Many questions but no definite answers. Total mystery!
Well, I am now pretty sure that I have found the answer recently when I returned to my paint and brushes (which I had put away 2 years ago) to execute a still life. As I had done many times before I mixed my paints, using cadmium yellow, cadmium orange and cadmium red along with other colors and worked for about 2 hours. That same night I started coughing and having some chills but nothing else. I concluded I was coming down with the flu (though I had had the flu shot earlier in the season and had never had the flu for many many years), and took some cough syrup. But the cough would not stop, it was wrenching and constant, though did not prevent me from doing my chores, going out for groceries, etc. So I went back to painting and realized that I needed to buy more of the orange color. I went to Michael's and saw that the cadmium colors were now available without the cadmium. It got me thinking and as soon as I got home I googled "cadmium" to learn that it is now banned in Europe as it can cause flu-like symptoms if inhaled without enough aeration. So how can it be still sold in the US if it is a poison?
Since I developed the disease so late in life, after painting for about 10 years, I truly believe that this was the cause of my illness.
That's my story. I would like to hear yours.
Charlene Marshall
Hi Gisele,
Thank you so much for taking the time to write our your experience with IPF, and your desire to find answers about why you received this diagnosis. I appreciated reading your story!
I know for many people, they have been actively trying to find out answers about why they were diagnosed with IPF. Based on forum conversations, many patients have asked really good conversations to their doctors about their previous lifestyle choices (ie. smoking), work environments or hazardous home exposures such as mild. It sounds as though most of those people don't end up with a definitive answer from their doctors unfortunately, because as you say 'idiopathic' means even the physicians are unsure how it happened.
For me, I never smoked a day in my life, lived in good condition and relatively new homes all of my life, worked in an office where I didn't have known environmental hazards on the job and no one in my family has a lung disease. Therefore, we're still trying to find out the cause but certainly don't have anything definitive yet. At some point, I think I'm going to have to choose to stop looking as well, so that I don't focus all my energy and remaining days on why it happened and instead focus on living a quality life with my disease, as much as I can anyways. Some people want/need to invest that energy in finding answers and others don't I suppose :)
I am glad you continue to do well 5 years post-diagnosis, this gives me hope. Also, thank you for sharing about this ingredient in paint... I know a lot of forum members are painters, and perhaps they can look to avoid this ingredient in future based on your story. Thank you again for taking the time to share it!
Warm regards,
Charlene.
Dianne Eldridge
Very, very interesting. I am an oil painter as well. Never made a connection. My pulmonary specialist minimized this as well. Just some food for thought, Thank you.
Charlene Marshall
Hi Dianne,
Thank you for reading my columns and reaching out! I always appreciate hearing from others about their experience living with IPF, so thanks for taking the time to provide us that 'food for thought'. Best wishes to you!
Charlene.
David Dombrowski
I could not help but laugh. My Friends and Family Ran for the Hills when I asked for any kind of help. It's just my Loving Wife Judy and her Family.
Charlene Marshall
Hi Dave,
I am sorry to hear that this has been your experience, although I am glad you have your wife and her family by your side.
I hope others will still find this post informative.
Warm regards,
Charlene.
Finn Schultz-Lorentzen
Having felt a shortage of breath for nearly a year, my doctor diagnosed either pulmonary fibrosis or a congested heart. As he didn't know which, he refused to refer me to a lung specialist. Which I thought odd. He did order a CT scan - which the hospital scheduled nine weeks down the road. I thought that odd, too. An abdominal CT scan was sceduled in half that time. Making it even odder.
Adjustment is obviously necessary. The nights are the flies in the ointment. You are asleep, and therefore vulnerable. The days - well, I just don't climb mountains anymore. Do make sure to get in my walks. Pacing myself according to how it feels.
I'm 84, so what the hell? Buses abound, so there's a remedy if (when) it gets too tough. At my time in life, something is bound to give, anyway. And one must be careful what to wish for. Maybe a safari to Kenya, wishing the lions 'bon apetite'.
Not my intention to be facetious. The disease is obviously a tragedy of enormous proportions. But think of the woman killed on the plane that recently had an engine explode?
No guarantees. Just enjoy evry single day. Imprint some facet or other on the mind. Homo Sapiens are mammals, children of Nature, nothing more nor less. Be accepting. Be grateful for what you had. If you read this you're obviously still alive. Something, anyhow!
Charlene Marshall
Hi Finn,
Thanks for sharing your thoughts on my column :)
I think it is odd that he didn't send you to a lung specialist as well, and I hope you get the opportunity to do that in the near future.
I like your thinking and agree with you that there certainly are no guarantees in life. Just make the best of and try to enjoy each day! I will try to be more grateful and accepting as well. Thanks for the great reminders!
Charlene.
Tom Heine
Many diseases do not have an overt, observable aspect but with IPF it seems more invisible. I'm 18 months post diagnosis and my wife sees and hears the coughing, fatigue and loss of energy, my friends and children do not. Facing this disease with strength while experiencing my physical and emotional strength sapped , is daunting. I work at not getting on the "Pitty Pot" as my friends in AA say. I also work at walking, testing my endurance and alternately just giving in when I need to and and taking a nap! Good luck all. Tom Heine
Charlene Marshall
Hi Tom,
Thanks for taking the time to read my columns and contribute to the comments.
I couldn't agree with you more re: this disease being mostly invisible, which I think complicates many aspects of it even more. With the exception of supplemental oxygen, oftentimes many of us look well and this makes it harder for others to understand, especially if they are not with us on a regular basis. It is so hard to try and experience how exceptionally difficult it is to live with IPF, especially when, as you say, it sucks your physical and emotional strength and energy. I also try most days to stay off the "pity pot", but it is hard sometimes and I think it is equally as important to give ourselves emotional grace as it is physical grace by resting when we need it. Hang in there Tom, and please feel free to connect any time.
Best wishes you to and your wife!
Warm regards,
Charlene.