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9 Things People With a Rare Disease Are Tired of Hearing
Idiopathic pulmonary fibrosis (IPF) is considered a rare disease, although this is hard to believe that when we see so many people in our online forums “community” impacted by this life-threatening lung disease. One thing I’ve heard consistently among many patients with rare diseases is that others are often unsure how to respond to our disease, or that their responses are greatly varied.
In addition to dealing with the physical and emotional impact of IPF, there is also the social impact to contend with and that can include questions about our disease from complete strangers. It can also mean navigating inappropriate responses from others, including friends, colleagues or family members. Sometimes these responses can be hurtful or tiring, although we know many of these people have good intentions.
Recently I read an article on TheMighty which was about things people with rare diseases are tired of hearing and I could certainly relate to this article. As a result, I thought I’d share the article with all of you as well.
You can read the full article here.
In addition to this list, are there other things that people say to you regarding your disease on a regular basis? Do you get tired of hearing certain responses about your illness? If so, please share with us!
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