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I am Immunocompromised. My Teenagers Have My Back

In a case of horrific, colossal, you-just-can’t-make-it-up crazy-bad timing, the Crohn’s disease (an incurable autoimmune disorder) I’ve suffered for my whole life decided to pick the middle of a global pandemic to come out of remission. To treat me—and keep me out of the hospital—doctors put me on immunosuppressants. Which means my family and I aren’t just social distancing, we are on extreme lockdown. We’re staying at home and treating our house like Shawshank. No one’s coming in or out. And we’re washing our hands like a maniacal Lady Macbeth.

I am one of millions with some kind of preexisting health condition for whom catching the virus would be even more dangerous. And my kids have a front-row seat to what that means.

When I was first diagnosed with Crohn’s as a young mom, after a lifetime of symptoms, I worried that my kids were stuck with a mom labeled “defective.” Mom Guilt can be pretty strong.

Fast-forward to a total of four kids, lots more life, too many ER trips to count, a couple of surgeries. Life with Crohn’s, despite gut and joint pain, is manageable more days than not. Until the pandemic.

My family and I have faced down my illness plenty of times before. But right now, with the world in turmoil, it is a little bit scarier. What I have realized, though, is having a mom with health challenges has some surprising (and positive) impacts, things I notice even more right now as we’re isolating together.

First, my kids operate as a team.

The four of them are a tight unit, with good relationships between them all. Immediately, they made decisions, such as my oldest daughter and oldest son staying away completely for right now. (Thank goodness for text and FaceTime.) My kids never fight—and have banded together over my illness before.

They rally around me and root for me. They don’t treat me like I’m made of glass. But they are compassionate and keep an eye on me, too. A little role reversal once in a while—which just means they’re growing up. You spend your mother-life ensuring your kids know you have their back and home is a soft place to land—and now I see them having my back in return.

None of them, not even my mumbling high school freshman, has grumbled about how seriously we have to take self-isolating. No visitors. No exceptions. There have been other times they had to make sacrifices. When I was in the ICU stepdown a decade ago, there was no visiting either. And all through their teen years, they’ve had to step up here and there when I’ve been too ill to get out of bed. There have been times plans have been canceled last minute because I was too sick to leave the house.

Not once have any of them complained.

There are kids everywhere feeling scared, stressed, resentful, kids who were seniors in high school or college (like my daughter) and now won’t have proms and graduation ceremonies. Kids missing family members they have to isolate from. For my kids, and the children of countless parents who are fighting autoimmune diseases, cancer, or who have serious pre-existing medical conditions, the self-isolation may not be all that new. But it’s still sad and tough for them.

But what I’ve noticed as we’ve played cards around the dinner table, pulled out Trivial Pursuit, and done jigsaw puzzles is how close we all are—no doubt at least somewhat because all these years they’ve had to understand mom’s got a wonky gene.

I’m really proud of them.

We’re always hearing how self-centered teens are. But I’ve found the opposite to be true. The incurable autoimmune disease that I thought was so unfair a burden for my kids, that I feared somehow ruined the innocence of their childhood and teen years, actually has given them a maturity and understanding beyond their years. And for that, I am ever grateful.

Erica Orloff

Erica Orloff is freelance writer and novelist based in Virginia. She is mom of four, a fanatical Yankees fan, and a collector of Buddha statues. Follow her on Twitter: @ericaorloff.

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