Well-intended, Infuriating Comments
I read an article yesterday in Pulmonary Fibrosis News that told about a woman who was diagnosed with idiopathic pulmonary fibrosis (IPF) in June. Her disease is progressing so fast that she needs a double lung transplant now – like now. She is on the transplant list, but doctors say that if she does not get new lungs she will likely die within six months. Her assessment for transplant must have been expedited, which shows her urgent need for the life-saving measure.
The hardest part of living with IPF is balancing the seriousness of this disease with how it manifests itself so differently in everyone. For example, on one hand we have a young mother of three who was diagnosed and given six months to live without a transplant while, on the other hand, we have an IPF patients who looks well and receives comments like “you don’t even look sick!”
I was at a grocery store the other day and carrying around my “small” oxygen tank (D tank, 425L). I emphasize “small” because carrying anything at all when you have IPF is a feat that leaves you breathless.
I had the tank in the shopping cart but didn’t have the nasal cannula’s on at the time, although it was in a medical bag with reflectors and the embroidered words “oxygen” on the side, making it obvious that I was carrying oxygen. The cashier watched as I struggled to load things from the cart to the counter. It was obvious that she was wondering why I was struggling so much. When I had to stop for a moment to turn on my tank and put on my nasal cannulas, her puzzled look became even more obvious. She then asked me if the tank was mine, which confused me a little bit. Believe me, you don’t want to carry around oxygen if you don’t need it.
My wonderful friend and fellow columnist Serena Lawrence recently wrote an amazing post about how using oxygen or other ‘disability’ props as Halloween costumes can be hurtful to those of us who need these things for daily function. Having an oxygen tank is embarrassing, especially for a young adult. It is heavy and cumbersome to lug around. A lot of maintenance and calculation is required to keep your tank full and in working order.
It also illuminates an otherwise invisible disease that makes people say things like “you don’t even look sick!” Nope, some days I don’t look sick. You are right. But that doesn’t excuse the fact that most days I feel sick — exhausted, sore, breathless, or just emotionally grumpy because I have a fatal disease and I am not even 30 years old.
Comments from a friend
A dear friend of mine visited this past weekend. I love that we’re good enough friends that she was able to outright tell me that she noticed changes in me since the last time we saw each other. She has known me for years and has always been an incredible friend. She particularly commented on my fatigue, paleness, and my breathlessness while talking.
So maybe to most folks I don’t really look sick, but some days I feel awful whether physically or emotionally. Those who know me well can see how much IPF is changing my life. I know some people do not say things to me to be cruel, but it is still frustrating and hurtful to hear sometimes. Perhaps the grocery store incident was particularly upsetting because I am emotional this week. While anticipating a major trip coming up, I am coping with the loss of two people who I care about — one from IPF and the other (unexpectedly) from cancer.
For what it’s worth, I thought I’d write to raise awareness about comments that can come across as insensitive and hurtful even when intentions are completely opposite.
To be specific though, comments like this “You don’t even look sick”) are very different from ones like “You look good today”, or “You’re very pink (as opposed to blue/grey)” and so on. I appreciate those comments and I know they are well intended. They also make me feel like I don’t look awful all the time. A lot of folks who may be reading this say those those great things to me, especially my amazing colleagues.
Ok, rant over.
Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Sandra Butkovich
My 66 y/o sister and then my 80 y/o brother died of IPF. My sister had smoked and suffered a short time before she died. She was heavy and then heavier on predisone (?) and think that made it more difficult for her and for those who helped her. My brother who never smoked, kept his weight down and managed many years with IPF. More amazingly, he had a great attitude which I am sure helped him live about nine good years with only last two on oxygen on and Rxs. My issue is that when I mention my fears of me contracting this, with my grown children, I am shut down immediately, as if i am borrowing trouble or whining. Even the Drs react this way, so I am now I don't even tell them about it. I can't be the only person who lives in fear of eventually receiving this diagnosis which we were told is a familial disease. Even those close to it, say things like 'Oh well, there will be a cure by the time you are diagnosed.' Or, 'you'll have to die of something eventually' I'm 68 for Pete's sake! Fear alone, along with lack of support re: the fear, is a lonely place. The siblings and children of those they have watched suffer and die, seem left alone to deal not only with grief, but fear that other blood relatives or themselves will eventually suffer this trauma. Even with cancer, there is usually some hope of treatment and /or cure or remission, but with IPF, well it seems pretty hopeless and yet others still remain insensitive to this fatal diagnosis. I have seen the lack of empathy even in the medical field as it seems there is much ignorance about IPF. I once prepared a chest x ray and blood sample as requested for research. I was told however, that I MUST be informed of the results even if positive. I threw them out. I wanted to provide for research but my personal desire to 'not know' could not be respected. And that was IPF research! I live today as if i don't have it, I don't talk about it as no wants to listen. I choose to live in denial rather than the stress of knowing with lack of support.