Coping with triggering words while living with an invisible illness
Even well-meaning comments can sometimes frustrate us patients
When people first think about disease or disability, they usually go to the physical symptoms — understandably, since they’re the most visible. But a chronic illness can affect all aspects of life. The emotional, social, mental, and financial implications can be grueling for patients, too.
As a patient diagnosed with idiopathic pulmonary fibrosis (IPF) seven years ago, I can attest to the magnitude of challenges chronic illness can cause, including those challenges beyond the physical. In fact, one of the most unexpected issues I’ve faced has been IPF’s emotional comorbidities.
I’m easily angered, for instance, when I’m not able to do the same activities as my peers. When they’re meeting certain lifetime milestones while I’m focused on simply keeping my health stable, it feels unfair. The worst part is that there’s no one to receive my anger because no one caused my IPF. I’m left to process that anger within myself. Once I do that, what’s left is an array of different emotions.
Amid them, I have to remind myself that no one understands what it’s like to live with IPF except patients and their caregivers. No one else knows how the disease feels, what the exhaustion is like, or how many limits it creates. As a result, I try not to hold people responsible for comments to me that may unintentionally hurt.
The reality, though, is that words can hurt, even when spoken with good intentions. They can trigger me, producing emotions that come because I don’t have a choice but to continue with life as a young adult with IPF.
Following are some comments that trigger me, with some reasons why.
‘You are so strong’
But I’m not. It’s just what people see on the outside.
As a self-preservation strategy, I let few people see me at my weakest moments. When I do, people might say “you are so strong” in response to my recovery from a setback or hospitalization. While I know their intentions are good, I want to respond by telling them I didn’t really have a choice.
IPF doesn’t wait for anyone; chores still need to get done, income has to be earned by work, and fights to rebound follow exacerbations. There’s simply no alternative in each case, so I don’t see myself as that strong; I just see myself as having no choice but to continue on.
‘You don’t look sick’
For those who have a chronic illness, this comment can be debilitating since many illnesses are invisible. Someone who tells me “you don’t look sick” might be right; I don’t look sick. But I am.
Even if my illness is invisible, I can’t always keep up with my peers’ activities, and I may decline social events because of my fatigue or fear of catching a virus. (I’m immunocompromised, after all.) Since others often look for physical clues of illness and disability, they may not understand the extent of the limitations I face.
‘You’re managing to get things done’
While I do accomplish a lot, it takes every ounce of my energy to do it. Unfortunately, I’ve sometimes compromised my health to do work projects or personal tasks because no one else was available to take them on.
This speaker might respond that everyone is replaceable, but I’m referring to home tasks that I and others with pulmonary fibrosis might face, especially those who live alone. We often don’t have a choice whether to get things done, so while we manage and maybe make it look easy, I assure you it isn’t.
‘What did you do to cause your lung disease?’
This comment is infuriating because even seven years later, I still grapple with the notion that I lived an active, healthy life and still ended up with a life-threatening lung disease.
In my experience, people want to find a reason for chronic illness. It’s hard for them to accept that diseases can be idiopathic, which means they happen spontaneously or their cause is unknown. This comment can trigger a patient; I know I’ve spent years racking my brain to understand how I ended up with IPF.
These are but a few of the comments that I hope I won’t hear again.
Are there comments you find triggering as an IPF patient? Please share them in the comments below.
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.
About the Author
Comments
Terri Gordy
I'm sorry. I know it's hard. I get tired of hearing, "You look great." My mom says it all the time. Part of it's her lack of empathy (for anyone, not just me), but another part is not knowing what else to say. As a cancer survivor, on top of having lung disease, I know it can be challenging to know what to say to those of us with invisible diseases. People feel like they have to say something when you tell them you don't feel good when they could just say something like, I'm sorry you're going through that." I think the "You look great" comments are their way of making us feel better or putting a positive spin on what we're living with daily. I can't believe someone would ask you what you did to cause your lung disease. That kind of comment is super insensitive, but I think, as you mention, it's human nature to want to find a cause for illnesses. I think it helps to keep in mind that most people have good intentions.
Rand O'Brien
When asked, how are you doing? and I answer "Doin' okay!" and the rejoinder is "Just okay?" I always say, " Hey, okay is pretty good sometimes!" That tends to be a show stopper, but that's okay! They got the point and my reality. I don't need to take care of them and that the world should be "good." Actually a few minutes ago, someone said back, "I like to hear 'good'!" I din't say anything back at that point. Rand
Conni borwick
You were spot on! I can absolutely relate to what you have written.
The emotional aspect of this disease is to me worse than the physical 😪
You are an inspiration in your honesty and I feel so sorry that you are so young,
To deal with this disease.
Kathryn Maguie
The one that gets to me is " you look good". My response is thank you I am glad I look good even though I'm not feeling good. A gentle reminder that I'm sick. I realize the person's expectation is I should look sick. Oh well, it is what it is.
Jofac O'Handlin
Hi Charlene,
I cannot comprehend what it is like for a young person to suffer IPF, this deadful disease.
As, and I have to admit it, a geriatric in excellent physical condition, except! Now 10 years down the road of declining physical abilities and entering the 'end game.
On the occasion that I have spoken truthfully to friends, advising them about my prognosis, I get the response, 'Well we can all get hit by a big bus!'. I want to yell at them, 'Yes, but you cannot see your bus, I can see mine, it is Big and Red with IPF on the front, and it is coming down the street!'. But as you say, we look reasonably well, so I say yes that is true.
When one reaches my age, we do not necessarily know the health burden carried by others.
On a positive note, on Tuesday I will be giving a talk to a group of elderly friends on the viability of a local application for a wind farm. Suitably supported during my talk by a bottle of oxygen! Keeps the little grey cells going!
Kind thoughts, and best wishes to all.
Joe
Randall Thornton
Strength, you have to have it or you are gone. Not only do I have IPF, I also have 3 different heart problems. I have had 4 heart attacks because of that. My IPF is the cause of the last one. I had one of my lungs removed in 2020 because it was already destroyed and now my other is about 1/2 gone, My lung test last month showed I am at 27% and going down fast. My lung doctor said she is going to call it rapid progressing PF because of how fast it has progressed since the last test. I am to the point of not being able to do much of anything. I used to be able to do just about anything you could name around the house. Now bending over makes me oxygen short. Don't go anyplace anymore. I am back on the oxygen cylinders again instead of an Inogen.. It is not a hidden disease anymore for me. Everyone knows I have it because I am not the old me anymore.
I have a question for you all about the oxygen tubing. I have a 50ft. line to get from one end of the house to the other. For the past 3 years, it has been a rolled up mess and loves to trip you. Can anyone tell me what they do to keep the hose straight and not curled. I would really appreciate any advice you may have. I am tired of having my ears pulled off and getting hung up on something in the house.
Well, I have ramble enough, Everyone have a good day.
Jofac O'Handlin
Randall,
You made me laugh. The number of times I have stood up with my foot on the tube, and tried to 'pull my ears off', and I admit to having larger than average ears. Also passing through doors and hooking on the door handle / nob!
Like you I could do most jobs about the house, sadly, not any more. Just been struggling with a flat battery on the car. Just about got it out, gasping, now on charge, more gasping. New one to be ordered I thing!
Best wishes Joe.
Mr. James W. Eilert Jr.
No! Happy with each breath. I’ve had a full life (81) and enjoy with delight each day. Not jealous with anyone else’s walking, running, long trips, plane rides, exercising. I have my life, not going to get angry/upset by anyone - even family.
Amy Walker
Hi Charlene,
My trigger also is, You look great! Sometimes I just want to say, Well, have you heard me breathe lately? Also, when I was diagnosed some “ friends” just dropped me like a hot potato. I’m guessing they couldn’t handle it or didn’t know what to do. Maybe their mortality stared them in the face. It is very sobering. It takes guts to keep this going day after day. I am lucky to be 70 years old and was in good health. My prayer for you is that a cure is found for you and other younger people dealing with this disease. We all have to look inside of ourselves and listen to our God voiand be grader each day that we have with the people who truly love and care about us. God bless you and all of us.