Why My Kid and I Blog About Her Health
I read this passage on Eva Markvoort’s Livejournal. Danielle linked to Eva on Twitter about a month ago, and I’ve been following her posts, as she nears the end of her lifelong battle with cystic fibrosis, ever since.
David Casarett, M.D. wrote the article, and in it he discusses how most cancer reporting in traditional media barely mentions death and pain.
He ends with this:
Nevertheless, the future isn’t entirely bleak, because we have access to a wide range of other sources of information that can offer a more honest view of what it’s like to live (and die) with serious illnesses like cancer. For instance, people are turning to social networking sites like Facebook to stay in touch with friends and family members who are struggling with serious illness. In fact, some sites like CarePages are designed specifically for this purpose. Those sites provide a wealth of facts and feelings and beliefs, raw and unfiltered.
And blogs, of course, are becoming a widely available source of genuine perspectives of real people. Honest, direct, and passionate, many blogs tell it like it is. Like the wonderful blog of Eva Markvoort, a young woman dying of Cystic Fibrosis, who shares what she learns from each day that she has left.
Eva’s blog, and many others like it, carry messages of hope, of course. In that regard they’re not so different than what we’d get from the New York Times. They tell us what we want to hear.
But they also don’t shy away from the realities that people with serious illnesses like cancer face every day. They tell us not only about the good days, but about the bad days, too. They’re not just about hope, but also about despair. That is, they’re telling us not just what we want to hear, but also what we need to hear.
Asthma is not like cancer or cystic fibrosis. It can be life-threatening, but usually it’s not. It is serious, for some more than others, and it is life-changing.
Blogging helps. It provides a connection and a shared experience for parents like me and for patients like my kid, but it also holds the chance to illuminate details and change perceptions of the chronic illness itself.