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Frustrating Things People Say To Me as a Patient with IPF
Patients living with any type of chronic illness could likely write a book about how people respond and try to relate to their illness. Since being diagnosed with idiopathic pulmonary fibrosis (IPF) before I was thirty, and living with a disease that is typically unheard of, I have a million different stories about how people respond to my illness.
It is obvious to me that some people, most in fact, are genuine in their attempt to relate an experience they’ve had with my illness. It is human nature to want to feel connected to one another, and people try to do this in all sorts of different ways. People tell me stories of when they were sick and experienced shortness of breath episodes, or a share a success story about their friend who had a transplant. The latter of those stories however, doesn’t always end with a good outcome because I’ve had people tell me about their friend who had a lung transplant but…wait for it … died a short time later… true story!
Despite people’s intentions, and the fact that usually folks are well-intended when they try to empathize with me or relate to what I am going through, there are always things that people say which make me angry. I try not to get angry, and rarely does this show through externally but inside certain comments make me furious. Here are some of those comments:
- “I wish I could help you, or support you but I can’t because…”. When I am in need of help and support, or quite simply, just want to not feel alone; I don’t actually want to hear about how much you wish you could help me but can’t. I know this sounds selfish, and it feels that way too…I don’t know what else to say, but this comment infuriates me when people say it.
- “I understand what you’re going through”: I’m sure many of us get this and I just want to scream back: no, you don’t actually! Unless you also have IPF you don’t understand, although I appreciate that there are people who try to get it and are just trying to comfort me. However, this is especially frustrating when others talk about their shortness of breath for a couple days when they had a cold.
- “I know how you feel”: similar to my sentiments above, I try to kindly reiterate to the people saying this that they don’t know how I feel but I appreciate their support.
- “Stay positive”: this is probably the most well-intended comment that others share with me, and I do appreciate it. I understand and respect the importance of positivity when it comes to chronic illness, however, sometimes when your body feels riddled from a constant cough, poked and prodded from bloodwork, or scanned regularly; it can be hard to feel or stay positive. Just as important as it is to be positive whenever possible, I think it is equally healthy to accept and “feel” the bad / tough days too.
Are there frustrating things that others’ say to you about your diagnosis, or during your difficult days?
If so, how do you cope with or respond to them?
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2 Replies
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Charlene,
All of the above.
I am at a point in life where I simply ignore such comments, people may mean well or they may be mean, regardless I take such comments as stemming from ignorance and I don’t feel I have to educate them.
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Love your take on this Gil, and appreciate hearing how you deal with comments from others!
I find it easier to turn away from the people making the comments, and not educate them or even respond to things they say that are frustrating or upsetting. What I find harder is letting the comments go, and not holding onto the emotion (ie. frustration) that others’ caused within me. I do need to do better at this in general – letting frustrating things go so I can be happier, although I find this tough for me lately. Are you able to easily let the comments others say go Gil, so they don’t impact your mood? If so, have any tips you want to share with me?
Chat soon and thanks again for writing!
Cheers,
Charlene.
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