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El-Jayyousi creates support group for students with chronic illnesses

El-Jayyousi was diagnosed with thyroid cancer at the end of her freshman year

March 19, 2014

Farah El-Jayyousi had just arrived home from her last final of the semester. Her parents sat her down, saying they needed to talk.

Her tests for thyroid cancer had come back positive.

“It was the last thing I was expecting to hear,” El-Jayyousi said. “I was expecting to get in trouble for not cleaning my room or something like that.”

El-Jayyousi was diagnosed with papillary thyroid cancer at the end of her freshman year. After a thyroidectomy and strenuous treatment process, she has been cancer-free since December 2012.

She saw the need for a support group for college students coping with chronic illnesses, so she decided to start her own.

El-Jayyousi tentatively calls the group Chronically Awesome; she is currently in the process of getting approval from the Organization Resource Group to be named an official student organization. Once the group writes a constitution and assigns officers and an adviser, it will be able to seek approval as an official organization.

El-Jayyousi said her treatment would have been easier if she had had another peer to relate to.

“I met one other person through a thyroid cancer support group at Ellis (Fischel Cancer Center) who was this old man who had a different kind of thyroid cancer,” El-Jayyousi said. “He was really nice, but it's not the same as talking with someone who's your own age who's gone through the same things you have.”

Because of this, El-Jayyousi took to the Internet to find young people going through the same things as herself. Websites such as Tumblr foster a community of “spoonies,” she said, stemming from blogger Christine Miserandino’s “spoon theory” of explaining chronic illnesses.

Trying to tell her friend about lupus in a diner, Miserandino referred to energy as spoons. While someone who is healthy has an unlimited number of spoons, someone suffering with a chronic illness has to be conscious of how many spoons — or how much energy — they use throughout the day.

“This is my life now,” El-Jayyousi said. “I just have to learn my limits so that I can take care of myself and do what I want to do. Just because I might be more limited energy-wise than other people my age doesn't mean I can't do a lot of the things I wanted to do pre-cancer.”

Thyroid cancer is one of the fastest growing types of cancer, according to the The Thyroid Cancer Survivors’ Association. Additionally, 80 percent of those diagnosed have papillary thyroid cancer.

El-Jayyousi said she went through testing after finding a lump on her neck. Once the tests came back positive, doctors performed surgery to remove her thyroid.

To rid the body of remaining thyroid cells, she was required to take radioactive iodine pills. Before taking the pills, El-Jayyousi had to cut out her intake of iodine, an element common in most foods.

At the end of six weeks on the pills, she had to be isolated in her home for five days.

“I couldn't hug my parents,” El-Jayyousi said. “I couldn't be close to anyone for any amount of time. I had to Saran-wrap my bed so the radiation didn't penetrate or anything.”

The thyroid, located in the neck, is responsible for different functions ranging from metabolism to emotions. When the body lacks thyroid hormones, symptoms can mimic depression.

Throughout her treatment, El-Jayyousi found solace in her friends and family.

“Having that support system really helped because I had logical counter-arguments to that voice in my head that was saying, ‘The world sucks; everybody hates you,’” El-Jayyousi said. “(I remember thinking) ‘No, I have these great, awesome people in my life that are supporting me and helping me out.’”

El-Jayyousi wants to offer the same kind of support to those close to home dealing with chronic illnesses.

“She's making it about Mizzou,” said Katie Youmans, a senior involved with Chronically Awesome. “There are a lot of people who go to Mizzou who have disabilities (and) are overlooked. She wants to stop that. She wants to make it known that these individuals don't have to be isolated from everyone else.”

Along with being diagnosed with severe depression as a freshman, Youmans was also diagnosed with rheumatoid arthritis her sophomore year.

“I think that students at Mizzou who have disabilities should have peers to speak with about their disabilities and peers who will know what resources are out there for them,” Youmans said. “It's hard whenever you don't really know what's going on with you, in the emotional realm and the physical realm.”

El-Jayyousi is studying health psychology, and she plans to continue her activism beyond college. She wants to work with teenagers and young adults dealing with chronic illnesses and cancer.

“I don't hold the belief that good things happen to good people and bad things happen to bad people,” El-Jayyousi said. “Good and bad things happen to all people, and we don't have good and bad people. I kind of saw it more as a test in life. We all go through good and bad things, and it's just a test of your character.”

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Article comments

March 24, 2014 at 12:30 p.m.

Fares Akremi: Go Farah! You are an inspiration.

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