PPCM Stands for Debbie Downer
One thing that a postpartum cardiomyopathy (PPCM) diagnosis can ensure is that you're always going to be the downer in the group of moms sharing their birth stories. No matter how you try to spin it - you'll still have everyone's full attention as they stare at you with surprise and horror as you tell you birth story. EVEN if you try not to tell it, eventually someone will ask you a simple question and inevitably it'll come up.
New and beautiful perspectives
"How did you get any sleep with newborn TWINS in your house??" I'm sure they ask in a way that means I deserve a badge of honor for surviving that newborn phase. But when I tell them I slept great because I had family taking care of the babies at night because I was too sick to do so.... well there goes the downer!
I don't mean to be pessimistic or negative, I'm truly grateful for my story. I would never wish PPCM on anyone and I didn't even know about it before I had it, but I've gained such a new and beautiful perspective on life and on love after going through it. Still, I find that truth doesn't take away the pity on people's faces when they hear about my experience.
It turns out most new moms don't need blood transfusions or to have their urine measured. And they aren't woken up multiple times during the night for more bloodwork. And most new moms, while very tired, are physically capable of sitting up straight and holding their babies for more than 5 minutes at a time without literally passing out.
For the first few years of my life as a new mom, I would feel stressed and anxious anytime someone started talking about their birth story. I knew eventually we'd make our way around the circle of friends and I would be expected to share mine. I hated that look and the "awes" I would get. But now I look at it as a prime opportunity to share what I've been through and educate other women about my condition.
PPCM is a very rare condition affecting only about 1,000-1,300 women in the US per year. Because it's so rare, many women (and even many doctors) don't know about it. So after a few years, I realized I could continue to keep my story to myself and avoid ever having to be pitied, or I could share my story and spread awareness, one person, at a time.
By sharing my story I've been able to make so many connections with other women who have had traumatic birth stories as well, whether they also had PPCM or another condition.
So while my story might bring the energy at the party down for a minute, I hope it does even more good in the long run! If I can help one struggling mom get the testing that she needs when she's sick then it's worth it. Awareness of the condition is the first step in being able to get women early detection, and potentially save lives.
What type of heart failure have you been diagnosed with?