Talking About Children and Chronic Illness
I had another, different post set up for this morning, but I stopped working on it for 2 reasons:
1. The Medicated Child on PBS last night.
2. Today’s NY Times Article About Robyn O’Brien, food industry conspiracy theorist and mother of a food-allergic child.
Neither of these links addresses asthma, but if you think and read about children’s health you should go visit them. In the first, FRONTLINE examines mental illness in children, bipolar disorder especially, and the 6 million U.S. children on psychiatric medication. The second link outlines O’Brien and her controversial theory that
[t]he food supply is being manipulated with additives, genetic modification, hormones and herbicides, causing increases in allergies, autism and other disorders in children. . . . Kim Severson, NY Times
You know I’m not going to sit here and try to dissect mental illness in children or the thorny issue of pediatric psychiatric prescriptions. I’m certainly not going near Ms. O’Brien’s theory, either, being neither a food allergic parent nor a person familiar with current food allergy research.
I am going to ask a question.
What’s going on with our kids? Seriously.
This isn’t the first time I’ve asked the question, as you well know, and I’m not the first person to ask it. Before you start constructing arguments with me in your heads, understand I recognize the following concepts:
1. Higher rates of chronic illness in children probably partially results from better medical technology and diagnostic tools.
As Rick points out in his fascinating post about asthma treatment history that you should go read, plenty of kids like my daughter would have died as babies years ago, before modern medical technology could diagnosis them with asthma.
2. The Internet means better exposure for all patients with chronic illness.
Of course we’re going to read and hear more about diseases like asthma, given the billions of blogs and other websites.
But, you know, concepts don’t mean very much when it’s your kid who can’t breathe, and during the emergencies you don’t really care why she’s sick–you just want her to get better, to just breathe better. You start asking the bigger questions later and looking for someone understands.
I think that’s my bigger question, but my thoughts on this aren’t organized well enough yet to do the subject justice. Here it goes, anyway.
Why does parenting a child with a chronic health problem make us feel so alone?
If millions of U.S. children have asthma, for example, why has the biggest response to this blog–through the comments and the email–been from asthma patients and parents relieved to find someone else dealing with it, too?
Why do desperate parents have to sell cookies to fund research on their kids’ rare brain tumors? I’m not kidding. Go read the link, and you’ll be disgusted, too.
Again, I’m not trying to oversimplify. Disease or chronic illness, by their very specific natures and the special lifestyle requirements and restrictions they can require, isolate you from other people not living the same way.
I think the loneliness of this kind of parenting has deeper roots, though. We’re supposed to get our kids into safe and reputable schools, help them learn how to read, expose them to culture and nature and limit the TV, and find the means to buy them what they need and a little of what they want. Somehow the emphasis on those universal parenting duties means those of us struggling with our children’s health feel sidelined.
People don’t like to talk about illness if they don’t have to. It’s not always a hopeful subject, although thankfully there are plenty of pediatric medical stories with happy endings. It’s not particularly lighthearted, either, and there’s nothing sexy about respiratory symptoms, breath tests, and body fluids.
The good news: more and more I’m seeing evidence of better research, investigative productions like the PBS one above, websites and advocacy from concerned parents (including the controversial ones), and increasing numbers of people on the Internet talking about illness and asking the important questions.