MARION — After 15-year-old Sid Karasek was diagnosed with a chronic illness, she felt like there was no one her own age to turn to for support.
“When you’re in pain every day, you want to communicate that and talk to other people about that,” said Karasek, who lives with POTS — postural orthostatic tachycardia syndrome — a chronic illness that causes an abnormal rise in heart rate, and Ehlers-Danlos syndrome, which affects the skin, joints and blood vessels.
Karasek looked for a support group for teens with chronic illnesses in Eastern Iowa. When she couldn’t find one, she decided to create her own support group and named it Youth Helping Youth.
The group met for the first time at the Marion Public Library on July 24. Karasek spread the word through Facebook and, to her delight, five other teenagers met her in the teen hangout area at the library and opened up about their struggle with chronic illness. One teen told Karasek that she attended the support group because she wanted to feel heard and help other people feel heard, she said.
“When you get diagnosed with a chronic illness, it’s so easy to feel alone and to feel hopeless, but you’re not alone,” Karasek said. “There are many people like you, and at the end of the day we’re all just people trying to get by and live our life.”
Karasek was diagnosed with chronic illnesses after having a seizure when she was 13 years old. Since then, she has worked hard to feel in control of her chronic illnesses, working with her doctors and turning to God to stay positive through her diagnosis, she said.
Being diagnosed with chronic illnesses has changed Karasek’s life, she said. While she was relieved to have answers to some of the health problems she had been experiencing, she said it also “sucked.”
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Two years after she was diagnosed, Karasek is beginning to feel in control of her health and how she reacts to it.
“I could sit on my couch all day complaining, or I could do this (Youth Helping Youth) and help other people,” Karasek said. “I’m going to continue it as long as I can. I can tell it’s already helping other people.”
Being diagnosed with a chronic illness is a life-changing event, said Dr. Teresa Young, a licensed health psychologist at UnityPoint Health-St. Luke’s Hospital in the Physical Medicine and Rehabilitation Department. A chronic illness diagnosis can come with a lot of “very normal reactions” such as shock, sadness or worry, Young said in an email.
“Most people, even children, have some idea of how they would like their life to unfold, and the onset of an illness creates a level of uncertainty that can be difficult to tolerate,” Young said.
People with chronic illnesses benefit from hearing what others with a similar condition have gone through, Young said. However, the success of a peer support group depends on how effectively the group is implemented, she said. For example, some peer support groups run the risk of “rumination, which is an unhealthy pattern of focusing on only upsetting aspects of the situation,” she said.
Young said she knows of no other chronic medical illness support groups for teens in Eastern Iowa, but she does know of a few for mental health.
When it comes to peer support groups, Young said she would emphasize quality over quantity.
“I think there is a need for increased support around chronic illness across the life span, and support groups provide an excellent opportunity for these individuals to network and develop relationships with people who understand what’s happening to them,” she said.
Karasek’s mother, Jess High, who also lives with chronic illnesses, said it’s hard for an adult to work through a chronic illness diagnosis. She said she can’t imagine how difficult it would be for a child to manage their chronic illness while also growing up.
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“You have to fight to keep your mind-set positive,” High said. “I think it’s really important for Sidney (Sid Karasek) and others to make friends with kids who might know what it’s like to be them.”
Norah Hammond, marketing and resource development manager at the Marion Public Library, said they are always very proud to see teenagers engaging in their community.
“Sid is someone who volunteers at the library,” Hammond said. “We’re glad she thinks of this as a place she can come to and feel comfortable and welcome others as well.”
Hammond said that everyone is welcome at the library, and they allow groups to meet for free as long as they are following the library’s behavior guidelines, which can be found on the library website at marionpubliclibrary.org.
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