What Youth with Chronic Illnesses Know About Life With Restrictions

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“This is the first time in my life in which I just can’t do what I want to do,” my friend recently lamented. I had just published 10 Ways the Pandemic Parallels Normal Life for Young People With Chronic Illnesses, and it suddenly dawned on me that I had neglected what is perhaps the most salient parallel: not being able to engage in the activities that once sparked joy, or having to jump through so many hoops to do so that the effort may appear to outweigh the reward.

When Limitations Are a Lifelong Reality

For young people without a chronic medical condition, the pandemic may be the first time they have faced major restrictions. Birthday parties, band practices, and beer gardens were suddenly taken away. Playdates became an artifact of the past, prom a mere fantasy. My therapy patients described feeling robbed, like an evil force had stolen their freedom and spontaneity in the blink of an eye. The list of things they can’t do seemed to outweigh the list of things they can do.

For many young people with chronic medical conditions, though, limitations are a lifelong reality. A child with a milk allergy may not be able to partake in a pizza party, a teenager with leukemia may repeatedly miss band practice for chemotherapy, and a young adult with lupus may have great difficulty basking in the sun of the beer garden.

However, unlike the collective suffering of the pandemic, in which we have essentially all been placed on probation, restrictions due to chronic illness are much more individual. With the pandemic, it’s like the whole world is sitting on the sidelines. With chronic illness, young people often feel like they are sitting alone on the sidelines while their peers are all playing the game.

Throughout the pandemic, many have experienced uncomfortable emotions—anger, disgust, frustration, jealousy—upon seeing friends, family members, and strangers live their lives like it is not a global pandemic. When hunkered down at home, it may be quite difficult for a parent to explain that their family had to cancel their vacation once again, while the neighbors are on their third “essential" pandemic escape.

In my work with adolescents and young adults these days, I am constantly being asked, “Everyone else gets to, so why can’t I?” This is a completely valid reaction to the current circumstances, and I empathize with these patients. I am immediately reminded of the numerous times I have felt this way, dating back to my preschool years. Everyone else gets to eat the cupcakes. Why can’t I? Everyone else gets to run in the race. Why can’t I? Everyone else gets to drink at the frat party. Why can’t I? In each of these scenarios, I’ve watched on the sidelines, longing to play a game that my body prohibited due to various autoimmune anomalies. At camps for kids with type 1 diabetes, I’ve spent hours sitting on the edge of the pool with children whose blood sugars are too low to swim safely. I’m never quite sure if it is really sunscreen that's bothering their eyes, or if it is the tears of missing out on a cherished activity. Again.

Now that restrictions have started to lift, many young people are slowly returning to activities. But school behind plexiglass is just not the same; neither is dance class in six-by-six squares, nor Disney vacations accompanied by masks. Yes, the number of things they can do is increasing, but there are so many things to worry about and so many extra precautions to take, that young people may wonder if they should even bother trying. Yes, there is the “new normal,” yet many are longing to hit rewind, to return to when they could just do what they wanted to do, without thinking about everything.

This, too, is a common wish for youth with chronic illnesses. Although certain endeavors may be completely off-limits, others are permissible yet quite cumbersome. A child with kidney disease may very well be able to travel, yet coordinating vacation destinations based on dialysis centers is not exactly ideal. A teenager with food allergies may be able to go on the senior class trip, yet calling dozens of restaurants, hotels, and grocery stores in advance may take away a good deal of fun. A young adult with inflammatory bowel disease may be able to run a marathon, yet planning training runs around bathroom stops may take more endurance than the miles themselves.

Strategies for Dealing With Restrictions

For those without medical conditions, restrictions are temporary. For those with medical conditions, though, restrictions are long-lasting, sometimes even permanent. While this may sound gloomy, psychology can certainly help! Here are three of my favorite strategies for dealing with restrictions imposed by the pandemic and chronic illness alike:

Chronic Illness Essential Reads

The High Cost of Caring: Financial Planning for Chronic Illness

When the Patient's Physical Symptoms Can't Be Explained

Turn Can’t Into Can. Practice cognitive restructuring, or changing thought patterns that are not serving you well. For each thing that you can’t do, write down three things that you can do. This may take some creativity, but generating possibilities will leave you feeling empowered. I can’t sleep over at my friend’s house; I can FaceTime with her, hang out in her backyard, or plan the best post-pandemic sleepover party for when it is safe.

Activate, Activate, Activate. Try behavioral activation, or engaging in activities that leave you feeling rewarded, even if you don’t feel like doing them. I am in so much pain that talking to my friend seems unbearably difficult, but I know that social connection always makes me feel better.

Practice dialectical thinking. Train yourself to see that opposites can be simultaneously true. Replace either-or thinking with both-and thinking. I acknowledge that this feels unfair, and I will learn and grow because of it. I accept that this is a challenging time, and I hope that it gets better. After all, life—with a chronic illness or in the time of COVID—is not brutal or beautiful, but brutiful.