If there’s one thing I’ve learned over the ten years since Charlie’s death, it’s that there is a fine line between creating awareness and creating fear.
The other day at work, I was reminded of this.
I was talking with a coworker about a friend of hers whose daughter was admitted to the hospital with symptoms that were very reminiscent of the Group B Strep that my son contracted and subsequently died from.
It took all I had not to ask to call the girl myself and ask her to make sure she asked the doctors to do x, y, and z, but I tried to calmly ask for details instead. She knew very little about the situation, as she was getting secondhand information, but on top of that, my coworker is pregnant.
I became concerned about not making my coworker panic. I could see the look on her face and almost feel her heartrate quicken. In sensing her panic, I backed off and tried to contain my own anxiety over the situation.
The old “it’s very rare to contract GBS and even more rare to die from it” line I use had to be pulled out. It’s like a friendly disclaimer I have to use pretty much every time I talk to someone about Group B Strep. It’s become part of the awareness campaign.
It’s also how you don’t create panicky parents.
For almost ten years, I’ve advocated for Group B Strep awareness. We, the GBS community, want more testing, more posters in OB/GYN offices, more protocol for antibiotics during labor. We want to shout it from the rooftops that GBS is bad and will kill our babies.
But it’s rare. It happens, but it’s rare. It doesn’t feel rare when it happens to YOU, and it doesn’t feel rare when you’re all of a sudden immersed in a community of people who have first hand experience with Group B Strep (or any other illness). But it is.
I see so many studies and results of focus groups that say this, that, and the other thing, that cause mass panic and cause new parents (who, let’s face it, are jumpy anyway) to fear ANY and EVERYthing that they possibly can.
That’s not helpful, in my humble opinion.
When we go forth and advocate for our cause, no matter what it may be, may we advocate sympathetically. May we all remember that fear helps noone. May we remember that new parents are already fearful of so many things organically, that teaching them gently is a better way.
May we hug that fine line between awareness and fear, firmly yet gently.