When You’re Immunocompromised, Getting “Back to Normal” Looks Different

As the weight of stay-at-home orders lift around the country, I find my mom guilt getting heavier. I’m an immunocompromised mom of two. There’s no telling when we’ll see any bit of normalcy back in our lives. I have Crohn’s disease and the biologic injection I give myself every two weeks knocks out my immune system, putting me at higher risk for COVID-19.

While my kids and husband are perfectly healthy, I am not.

Parks and playgrounds are starting to re-open. Email after email about summer programs and events for little ones gearing up to begin are filling up my inbox.

I can’t help but worry and wonder how to navigate the weeks and months ahead and not feel a bit selfish that my family will be forced to lay low far longer than most—because of me.

Both sides of my family are getting together in small groups. Everyone but us. We FaceTime so we don’t miss out on the celebratory gatherings, but I feel a pit in my stomach. I already feel like we’re the outcasts and life still isn’t anywhere near where it used to be. Seeing loved ones gathered indoors, together, makes me feel anxious and a bit unhinged.

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From playdates to anxiously awaiting the start of the school year, there’s no telling what is safe and what is dangerous. One innocent gathering or outing could cause our family harm . . . or be completely harmless. The thought of sending my son to 3-year-old preschool in a couple of months used to make me feel excited; now, it makes me feel numb. The guilt of him possibly missing out from that formative time with his peers hurts my heart. We’re damned if we do and damned if we don’t.

I’ve already had to delay my daughter’s 15-month well check-up and vaccines because my pediatrician warned me it would be too risky for even my husband to bring her in at the off chance they were to bring something home to me. I’ve already had to cancel my son’s dentist appointment to minimize the risk of possible exposure. And this is just the beginning.

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These past two-plus months haven’t felt all that bad because the rest of the population was taking the same precautionary measures.

But as quarantine expectations ease and limits are lifted, it puts my family and me between a rock and a hard place.

There’s no telling when we’ll get to see our loved ones again unless they’re six or more feet away from us outdoors. My kids won’t be getting any hugs or kisses from anyone but my husband or me for the foreseeable future. I anticipate this summer will involve invites from friends for hangouts with our little ones, and we’ll have to decline.

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Living through this pandemic is hard on everybody, but it’s especially challenging for those who fall in the high-risk category.

There are so many unknowns. So much fear. It gets to the point where you wonder if you’re taking things to the extreme or if you’re taking necessary action. You wonder how you’re ever going to be able to be in public and be around others without feeling anxious. 

There’s so much judgment. Everyone has an opinion and something to say.

But, as an immunocompromised mom, I’m going to follow my gut and try my best to drown out all the noise. I’m going to continue to trust my instincts and not worry about hurting people’s feelings or being questioned for my actions.

I know the guilt will remain, and it’s so hard to feel secluded and less than, but you need to do what you think is best so you and your family can come out safe and come out strong when this darkness lifts and brighter days remain.