When Others Start Returning to 'Normal' and You Still Have Chronic Illness

It happened. My life is starting to feel normal again. The only problem is, I had forgotten that our normal is a lot like other people’s pandemic.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

When the pandemic hit last year, my kids and I were already “social distancing” because I caught a cold at a family gathering at the end of February. My chronic fatigue symptoms went haywire and I spent the next four weeks in bed, finally needing antibiotics to get rid of what became a sinus infection. Naturally my kids caught my cold.

My teenager has Ehlers-Danlos syndrome and gets whole-body pain and fatigue flare-ups when they are sick, and my tween has asthma and a history of minor colds turning to pneumonia, so when any of us gets sniffly, we go into lockdown mode. When we found out about the declaration of the global COVID-19 pandemic and got the news of school closing, we were already stuck at home.

It felt like a normal March to me.

For us, much of fall, winter and spring are like this every year. We pass colds around, we take a lot of hot showers to clear our sinuses, wash our hands, lie in bed, blow our nose, and eat endless quantities of chicken soup and ramen.
Then there are the ER and urgent care visits, breathing treatments, prescriptions, lozenges and OTC medicines picked up at the pharmacy. Through the brain fog of illness and fatigue, I’m trying to remember what time the last dose of ibuprofen was taken, the last puffs on the inhaler, the last acetaminophen.

It’s just normal for us at this time of year.

For example, my tween started having classic hay fever symptoms a few days ago. I wasn’t concerned about them having COVID because they weren’t coughing or running a fever. They still aren’t showing signs of covid, but now their asthma is acting up and they’re even more congested. We’ve done two telehealth visits and a parking-lot doctor’s visit to listen to their breathing and adjust their asthma meds.

My teen is also congested, and my husband and I woke up with scratchy throats. My husband and I are fully vaccinated for COVID and my teenager has had one shot. None of us have symptoms that alarm us.

On the contrary, it feels in many ways like our pre-pandemic normal. Canceling the fun, no-contact weekend plans we made. Staying home, messaging with a friend or two. Lying in bed, staying in pajamas, eating soup, watching movies, playing video games, sanitizing hands, reminding my kids to take their pills and inhalers, making and eating pots of soup, keeping track of the clock, washing hands, making quick work of the six boxes of tissues I brought home from the store four days ago. Washing hands again.

Some of the pre-pandemic times weren’t like this, of course. We used to drive to Chicago to see family over the holidays (and had to go to the ER for my tween’s asthma at least once per trip). There was that time we drove home to Pittsburgh for eight hours with the same child running a fever. And Thanksgiving and Easter dinners, followed by my kids and I all staying home with upper respiratory infections for two weeks or more.

It was just normal. We didn’t even talk about it that much. We tried to roll with it, and didn’t give up seeing our family those few times a year.

This past year, though, I missed seeing my loved ones, but it was nice not having all of those colds and bugs. We’ve actually been healthier than ever, until now. My kids are back in school, and the safety measures seem to be working, our scratchy throats, allergies and asthma notwithstanding.

Some friends of mine can’t chance in-person school because they or their kids are too medically fragile. Social distancing all the time has been normal for them for much longer than the pandemic, which, let’s face it, isn’t even close to over for any of us.

But some people are already abandoning pandemic normal: getting together with family and friends, going on ER-visit-free family trips, going to restaurants and bars. Meanwhile, our “back to normal,” and that of other families like ours, is still going to feel a lot like what other people have been bemoaning.

Even so, I can give thanks that we’re here. After a long year that has taken so many lives and sent so many previously healthy people down the road of chronic illness we’ve been walking, we’ve made it this far. I’m grateful for that.

As long as we have this untidy home, these comfy pajamas, chicken soup, Netflix and my children’s Medicaid, which pays for all their doctor visits and prescriptions, I will just curl up on the sofa with my husband and my dogs and count my blessings.