At which point do you announce to your date that your child has a chronic illness?
“I’ll have the salad niçoise, the scallops, my daughter has cystic fibrosis, and the chocolate ganache for dessert.”
Or should it be disclosed on the online dating profile, before anyone winks or a single smile, swipe or poke is exchanged?
“I enjoy long walks on the beach, traveling to exotic locals, researching clinical trials, health insurance policies, and the long-term side effects of inhaled steroids. My turn-ons include men who frequently wash their hands, get an annual flu shot, and have tested negative for tuberculosis in the last two years.”
My daughter has cystic fibrosis. It’s a chronic illness that affects her respiratory and digestive systems and requires hours of her day for respiratory therapies, blood sugar draws and G-tube feeds. She takes meds to breathe, to eat, to poop, to live. It’s us, but it’s not all of us.
We are used to this life, so it’s difficult filling a stranger in on the details. For a “normal” person, it would be the equivalent of explaining the rituals of pouring a bowl of cereal in the morning. “First you get a bowl, then you add cereal, then the milk, and don’t forget the spoon.”
Our morning ritual is more like this, “First you sterilize the nebulizer med cups and add the albuterol and hypertonic saline and Pulmozyme, then you connect your child to a respiratory vest for the next 40 minutes for a good mucus shakedown, and huff coughs, then you give her a handful of meds and a nasal spray, poke her finger for a blood sugar read, administer meds through her gastronomy tube, feed her 1,000 calories of supplements and laxatives. Finally, it’s off to school!”
Cystic fibrosis is just what we do. It’s cereal.
We also live a relatively normal life—soccer, swimming, dance and Girl Scouts. If you were to see my girl in action, you would have no idea there was a crappy genetic defect on her Chromosome 7. It’s not a given. There are no flashing neon lights or caution tape announcing her presence as “different, chronic or disabled.”
Cystic fibrosis doesn’t define us. So at what point do I announce a big deal that isn’t always a big deal, that has shaped us, but doesn’t make us to someone who may or may not be interested in anything more than a coffee date anyway?
Most dating sites ask for gender, ethnicity, income, religion, past marital status, education, even what types of pets you own. But there is no box for “kid with special needs,” or “10-year-old-daughter with a chronic illness who is doing really well, but requires a ton of extra lovin!” section.
This is real life, and it’s not sexy. No profile photo of me filling my daughter’s G-tube bag would illicit any winks or slides and certainly not any pokes. The irony is that most people boast pictures of themselves participating in mud runs, marathons and ice bucket challenges for the causes they support. But those are gestures—a weekend of running, a moment of discomfort. It’s attractive to support a charity, but not to actually to be a charity.
Is it fair to get to know someone before delving into HMO policies and life expectancies? Is it fair to expect someone to take this life on when we, who are living it, did not choose it? Knowing how difficult it can be at times, I don’t know if I would date me, and I’m adorable. Wink, smile, right slide, poke!
Anyone would be lucky to know my daughter and be part of her life. She is a bonus, not baggage, and the best part of being with me is that you also get this incredibly smart and funny kid. But cystic fibrosis is part of that world as well.
Everyone has something, and I imagine that most people do not announce on date 1 or 2 or even 10 that they have things about them or their family that make life more challenging—an abusive childhood, a crazy ex, an anxiety disorder or massive student loan debt. We all have something. We all have cereal.
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