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.