We Have Invisible Illnesses

Hundreds of thousands of teens in the U.S. are silently—and bravely—coping with health conditions you may not see. Here, a few of them share what life is like when you have to think about your health 24/7.

Imagine your alarm goes off on a typical Monday morning. This week you have homework, sports practice, and after-school clubs, plus the usual social drama.

Now, imagine that on top of all your other stress, you’re not even sure you’ll be able to get out of bed.

That’s the reality for many of the hundreds of thousands of teens in this country who struggle with invisible illnesses—conditions that they cope with every day, but that other people can’t see.

Having an invisible illness comes with different burdens than other health issues. If you break your arm, everyone can see your cast. But if your illness silently attacks your body from the inside, no one can tell—and that only makes coping with it harder.

You might worry that talking about it bums people out. You might feel anxiety about how your illness impacts your family and friends.

You might feel as invisible as your disease.

So what does a teen with an invisible illness look like? No two are exactly the same. These teens are coping with conditions that currently have no cure, but they’re all working to change that. Here’s what they want you to know about their lives and how you can help.

Johnnie Murphy, 17, Ohio

80,000 children in the United States suffer from inflammatory bowel disease, the category of diseases under which Crohn’s falls.

What You See: A tall hockey player and star of the school play with a busy social life.

What You Don’t See: Johnnie suffers from an autoimmune disorder called Crohn’s disease .

Third grade was a terrible year for Johnnie. He basically stopped growing. He started throwing up for no reason. He had to go to the bathroom a lot. Worse, doctors couldn’t figure out what was wrong. They even thought it might be cancer, which made Johnnie terrified he was going to die.

Finally, doctors diagnosed him with Crohn’s disease, an autoimmune disorder that attacks the digestive system and makes it impossible to digest many foods. Crohn’s can cause diarrhea, stomach cramping, and extreme fatigue—and living with it can be painful and exhausting. “I’ve had days where getting out of bed is about all I can do for the day,” Johnnie says. To minimize those days, he takes medication and avoids foods that upset his stomach. For him that means no pizza, no birthday cake, no cookies—unless they’re gluten-free.

Johnnie’s adjusted to his new diet—for a while, a close friend ate only foods Johnnie could eat when they were together so Johnnie wouldn’t feel left out. But no matter how careful he is, he still has bad spells. “I can be having a great day, but without warning, I can suddenly be in intense pain or have to stay stuck in a bathroom,” he says.

Johnnie doesn’t let Crohn’s stop him from advocating for others with the disease—he’s even spoken in front of Congress with the Crohn’s and Colitis Foundation about his condition. Personally, he sometimes wishes people were more sympathetic—once, a teacher accused him of pretending to have a stomachache to miss a test.

“I want people to treat me normally, but I also need people to understand that just because I look healthy doesn’t mean I don’t suffer,” he says.

Tiahna Hughes, 16, Illinois

100,000 Americans have sickle cell disease.

What you see: An athletic teen who loves roller coasters, bowling, softball, and basketball.

What you don’t see: Tiahna was born with a painful genetic condition called sickle cell disease.

Some people wake up feeling like they’re getting a cold and think, “Hooray, I get to miss school!” But when Tiahna wakes up feeling that way, she knows the day might end with a trip to the hospital. That’s because she was born with sickle cell disease (SCD), a genetic condition that can cause crippling pain, fatigue, and dehydration.

So what does it feel like to have SCD? “Once or twice a week I just wake up feeling weak,” Tiahna says. “I feel it in my legs, my back, my head. Sometimes it’s so bad that I have to go to the hospital to get pain medicine and an IV so I stay hydrated.”

Unfortunately, Tiahna’s SCD has gotten worse as she’s gotten older. She keeps up with missed school with Google Classroom—but there’s no replacing all the field trips and family get-togethers she’s had to sit out. Her family and friends are supportive, but it can be hard for someone who doesn’t have SCD to relate. “It can be frustrating because they don’t really know what I go through,” she says. She also gets annoyed by people who label her as a “sickler.”

Some people are more debilitated by SCD than others, but Tiahna believes in having a positive attitude. “You can still accomplish things with sickle cell disease—it’s not an excuse,” she says.

“I’ve won softball championships for pitching,I bowl, I play basketball. Having SCD doesn’t have to stop me.”

Kabir Dewan, 16, N. Carolina

200,000 Americans under the age of 20 live with type 1 diabetes.

What you see: A star tennis player with big dreams to pursue a career in biomedical engineering.

What you don’t see: Kabir has type 1 diabetes , a genetic disease that affects his body’s ability to regulate his blood sugar.

Kabir began playing competitive tennis at the age of 8. But when he was 12, his eyes would get so blurry he could barely see the net. Other weird things were happening too: He lost nearly 10 pounds. He was always hungry and thirsty. And he was having headaches and dizzy spells.

One day after tennis practice, Kabir came home feeling awful. He passed out, then woke up in the hospital, where the nurse told him he’d had a stroke caused by type 1 diabetes. “At first I couldn’t believe it,” he says. “I’d never heard of type 1 diabetes.” He soon learned that the disease prevents his body from regulating his glucose, or blood sugar, levels.

The stroke put Kabir’s dreams of tennis stardom on hold. He had to go to physical therapy to learn how to walk again, and he also had to learn how to manage his disease. Today, he’s back to playing tennis. He wears two small devices that monitor and adjust his glucose levels. If the devices fail he has to inject himself with insulin, a hormone that processes glucose. “I have to do extra planning for activities others take for granted,” he says.

For Kabir, one of the hardest aspects of diabetes is combatting misconceptions. Because the other type of diabetes, type 2, is linked to diet, people can assume he’s lazy or eats poorly. In fact, he says, “Diabetes is a blessing in disguise, because it’s given me a healthier diet and active lifestyle. It’s also made me see that whatever adversity you’re facing, you’re never really alone.”

Lyndsey Crunk, 17, Kentucky

470,000 children in the U.S. are affected by epilepsy. 

What you see: A confident teen who likes to play the ukulele and watch baking videos.

What you don’t see: Lyndsey has epilepsy , a medical condition that causes seizures.

When Lyndsey was 12 years old, doctors told her shocking news: the eye twitches and muscle spasms she’d assumed were normal growing pains were actually epileptic seizures. Seven months later, she suffered her first major seizure while taking a shower. She lost consciousness, and ended up with 33 stitches in her ear. Her days of taking normal activities for granted were over.

Lyndsey’s biggest challenges have been anxiety and depression caused by the stress of living with epilepsy, and the fact that not everyone understands her condition. “There’s such a stigma around epilepsy—but it’s not contagious,” she says. “I’ve grown apart from some of my friends, but being supported is actually what I could use most.”

That’s because she never knows when she might have another seizure. People with epilepsy can have more than 40 different types of seizures—in Lyndsey’s case, hers appear as involuntary jerking of her arms and legs, twitching, and eye movements. Sometimes when she gets anxious she experiences twitching, so she talks to a therapist and does breathing exercises to stay calm. She also takes 11 pills a day to prevent seizures. The medicines’ side effects can be challenging: drowsiness, short-term memory loss, hair loss, and extreme fatigue, but Lyndsey doesn’t let them slow her down.

Her message to others: “No matter what you may be facing, never be afraid to talk about it.” And Lyndsey has put that advice into action. Her activism drove the creation of a new law in her state—the Lyndsey Crunk Act, which requires that people who work in schools get training about epilepsy.

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