By Natalia Alamdari

October 8, 2014

Chronic illnesses often leave students feeling alone, something senior Farah El-Jayyousi hopes to change with her new club Chronically Awesome.

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Sitting at her computer, Farah El-Jayyousi navigated her way to her Tumblr dashboard. Instead of scrolling through her feed as she usually did, she moved her cursor to the search bar.

Her summer had been filled with trips to the endocrinologist. Blood tests and doctor’s visits happened every week or so. She had been poked with needles so many times the insides of her elbows had bruises.

In an instant, posts by people her own age sharing their experiences with thyroid cancer, experiences she could relate to, filled her screen.

“It was kind of exciting,” Farah said. “Not exciting that there were other people who had cancer, but that there were other people that had my same experiences who were my age and were talking about them. I felt like I wasn't alone.”

But simply finding an online community that understood what she was going through wasn’t enough for Farah.

“I just thought, ‘Hey, it would be really cool if there was a club I could go to,’” she said.

And with that, Chronically Awesome began to take shape. Founded by Farah at the end of last year, the group seeks to create a safe space for students who identify as having a chronic illness.

It started with a pain in the front of her neck.

Upon further examination, Farah realized the pain was actually a lump. Panicking, she made an appointment with a doctor, but she was told it was “probably not cancer.”

“They did a biopsy where they stuck a really huge needle in my neck,” she said. “Most uncomfortable experience ever, and I was fully awake for it.”

With doctors assuring her not to worry, Farah continued about her daily life. Then, when she arrived home after finishing the last final of her freshman year, her parents told her they needed to talk.

She had tested positive for stage I papillary thyroid cancer.

“I was like, cancer, chemotherapy, oh my god,” Farah said. “It's just the C-word, it’s really scary. Everything was really unknown.”

Farah poses in Middlebush Hall.

Farah El-Jayyousi poses for a portrait Tuesday, Oct. 7, 2014, in Middlebush Hall. El-Jayyousi founded the Chronically Awesome, a support group for students with a chronic illness. Kevin Mathein/Senior staff photographer

One month later she had surgery to remove her thyroid from her neck. The thought of the procedure scared her, and she was nervous about having a scar.

After the removal of her thyroid, Farah had to go six weeks without any replacement hormone.

The thyroid produces hormones responsible for regulating bodily functions, such as metabolism, heart rate and blood pressure. When the body lacks thyroid hormones, patients are considered “hypothyroid.”

Without replacement hormones, Farah’s body was more susceptible to symptoms such as fatigue, aches and pains, and depression.

“I don't actually remember that summer very well, because a side effect of being hypothyroid is that your brain isn't as good at recording memories,” she said. “For example, I watched ‘The Hunger Games’ that summer. I didn't remember it at all.”

After being hypothyroid and going on an iodine-free diet for two weeks, Farah had to take two pills of iodine. With the radioactive iodine in her system, she was isolated in her bedroom for five days, unable to be within four feet of another person.

“That was the only space I occupied during that time,” she said. “My parents or my brother or sister would bring meals and set them by the door for me.”

Once her isolation ended, she was able to start taking pills to replace her thyroid hormone — pills that she will continue to take for the rest of her life.

Following her surgery, Farah began visiting her endocrinologist. In addition to her medical treatment, the doctor suggested she visit a thyroid cancer support group run by ThyCa, an organization for thyroid cancer survivors.

“There wasn't any kind of group for young people with chronic illness or cancer," Farah said.

Farah went to one of the group’s monthly meetings at Ellis Fischel Cancer Center, not expecting to be the youngest person by at least 40 years.

What was more, there was only one person with her type of thyroid cancer, an older retired man.

“Yeah, we had the same illness, but we experienced it in very different ways because we were at different stages in our lives,” Farah said. “There wasn't any kind of group for young people with chronic illness or cancer.”

Attendance never passed three people, including Farah. She only attended two meetings before ThyCa dropped the program, replacing it with support through phone and email.

For young adults with chronic illnesses, a lack of peers who can relate serves as a common issue.

Senior Mary Bifulco was diagnosed with fibromyalgia when she was 13.

“There was a year that I took off of school, and at the time I just wanted people my age who got it,” Mary said. “I would search online and ask everyone I knew, and I just couldn't really find anyone. It's hard for our culture to grasp what it means to have a chronic illness."

Typically, chronic illnesses develop as a person ages. About 133 million Americans are diagnosed with at least one chronic illness, and the figure is only expected to go up within the next 10 years. According to the Partnership to Fight Chronic Disease, an estimated 164 million Americans will develop a chronic illness by 2025.

That’s 49 percent of the population.

However, despite the growing numbers, adolescents and young adults, like Farah and Mary, still find themselves lacking peers who understand their experience with chronic illness.

Judith Fitzgerald Miller, dean of the Sinclair School of Nursing, said social support takes on just as important of a role as medical assistance.

“Social support groups provide a lot — not just the sharing of similar experiences, but they also offer tangible support,” she said. “The group is made up of varied people and they've all had different life experiences.”

While support from family and friends can help those with chronic illnesses cope, the value of an understanding community is still important, Miller said.

Farah said though her family and friends supported her, they could never understand what she was specifically going through.

“If I were to joke about parts of my treatment, a lot of times I'd get this nervous laughter, like, why are you joking about that?” Farah said. “But for me, humor is just a method of coping.”

In fact, research has found the use of humor can significantly improve the mental health of those with chronic illness. In a study conducted by Pamela Hinds of Children’s National Health System, children and young adults were more likely to respond more favorably to nurses who used humor.

This instills a sense of normality, which Miller said is important to develop.

“Any person with chronic illness has to face the fact that illness does not define who they are,” she said. “They are a unique human being who happens to have a chronic condition.”

But aside from personal acceptance comes social acceptance and understanding, which can be difficult given the misconceptions surrounding chronic illnesses.

Graduate student Pattie Quackenbush said she struggled with acceptance after being diagnosed with fibromyalgia and polycystic ovary syndrome when she was 25.

There are two schools of thought when it comes to the diagnosis of fibromyalgia: While some doctors see it as a physical condition, others think it stems from mental and emotional stress.

"It's hard because as a young person with an invisible condition, you look like you should be energetic and strong and able to do anything, but that's not always what your body is capable of or what is best for it," Mary said.

“Once I was diagnosed, I felt odd, like I didn't want to talk about it,” Pattie said. “I didn't know what people would think. I didn't want to go through judgment from my friends. I just dealt with it quietly.”

Fibromyalgia causes sufferers such as Pattie and Mary to feel pain throughout the body. Along with the chronic pain, fibromyalgia patients often have fatigue and cognitive troubles, sometimes referred to as “fibro-fog.”

With any chronic illness, some days are better than others, and what sets a “good” day apart from a “bad” varies from person to person.

“A day where I don’t hurt so much is good,” Pattie said. “Other days the pain is so bad I can barely move. Anything that minimizes my level of exhaustion and pain is a good day. Those are few and far between, but I make the most of it.”

At first glance, Pattie, Mary and Farah don’t look sick, which, according to Mary, is one of the most difficult things about having a chronic illness.

"It's hard because as a young person with an invisible condition, you look like you should be energetic and strong and able to do anything, but that's not always what your body is capable of or what is best for it," Mary said.

The social misconception that all illnesses are visible and curable can inadvertently contribute to ableism, or discrimination against those with disabilities.

“We kind of operate under the assumption that everyone is fully capable of doing everything,” Farah said. “That creates a lot of barriers for people with chronic illness and can make things very inaccessible.”

While the issue of accessibility may conjure thoughts of wheelchair ramps and sign language interpreters, it also crosses into social settings, including the structure of higher education.

For Farah, furthering her future includes attending graduate school. In today’s higher education, getting into graduate school isn’t just a matter of earning good grades, but a matter of overall involvement, something that can be difficult for students with chronic illnesses who may not have the energy to be as involved as those students without.

“We have a really fast-paced and competitive society,” Mary said. “I think it's hard for everyone to live up to those standards, whether you have a chronic illness or not.”

“The doctors told me that I would be back to normal once school got started,” Farah said. “That made it harder to deal with afterwards when I was actually confronted with reality.”

“That first semester was really difficult," Farah said. "I was really adjusting to what my new normal was, and I'm still adjusting to that and what I can actually do."

They didn’t explain that “back to normal” actually meant constant fatigue, nausea in the mornings, a sore scar and aching, weak muscles, all while juggling a 15-credit schedule and more doctor appointments.

“I was a little overly optimistic,” she said. “That first semester was really difficult. I was really adjusting to what my new normal was, and I'm still adjusting to that and what I can actually do.”

An involved sophomore, Farah also managed to participate in the Psi Chi psychology honor society and the Interactive Theater Troupe, and to hold the position of public relations chairwoman for the Muslim Student Organization, while somehow fitting sleep into her schedule. Without enough sleep, her conditions worsen.

“Sleep usually takes priority at the expense of other parts of my life,” Farah said.

She found it hard to find balance in her life that semester. She wanted to be involved and follow through with commitments she made, even though she realized that she couldn’t handle them.

After months of dealing with her condition, Farah was finally able to say she was cancer-free over winter break.

“The doctors never actually say, ‘you're in remission.’ Remission isn't a term for thyroid cancer,” Farah said. “Some people will say it's official after the radioactive iodine treatment. I think I waited until … they did a blood test and basically tested to see if (I had) thyroglobulin.”

Thyroid tissue produces thyroglobulin. Once the thyroid is removed, thyroglobulin levels should be undetectable, meaning the body is free of cancerous cells. If Farah’s twice-a-year blood tests ever came back with detectable thyroglobulin levels, it would provide support to believe her cancer had come back as well.

Now a senior, Farah has remained cancer-free.

According to ThyCa, papillary thyroid cancer has a long-term survival rate of over 90 percent, with a recurrence rate of 30 percent.

“It's referred to as the ‘good’ cancer, which is really terrible,” Farah said. “Obviously, no illness in general is good, and it's not OK to say that some experiences are more valid than others or more painful than others. Yes, having thyroid cancer you have a higher chance of survival, but it's still something that I have to deal with for the rest of my life.”

Farah went through her sophomore year still only finding relatable support through the Internet. Then, at the end the year, she had an idea: an organization at MU for students with chronic illnesses.

Lacking the time, energy and resources to make the organization happen, Farah left the idea in the back of her mind. One year later, however, she decided to go for it. She had to form the group before she graduated.

“Whatever's happened in my life has happened for a specific reason, and I want to utilize that to help other people because I can understand where (they) are coming from,” Farah said.

Farah gauged interest on Facebook, and eventually approached Julie Elman, professor of women’s and gender studies, to be the organization’s adviser. After writing a constitution, assigning officers and registering with the Organization Resource Group, Chronically Awesome became an official student organization in March 2014.

“I liked the name Chronically Awesome in part because it sort of embraces chronic illness as a space where people need support, but also a space where people can cultivate a sense of identity, something to claim,” Elman said.

On Sept. 15, seven people stood in a circle in the Women’s Center.

One at a time, each person held a ball of yarn and announced their name and major, along with a fact about themselves. The ball of yarn got tossed around the circle, creating an intricate web as each person shared something about themselves.

Someone asked why they were doing the activity in the first place.

“It’s just supposed to show unity and connection,” Farah said. “And cheesiness.”

They each took a seat on couches arranged in a circle, ready to discuss the goals of Chronically Awesome.

“It meant a lot to me to be in a room full of people that could understand where I was coming from,” Mary said.

Mary got emotional as members described the safe space they hoped to get out of the group.

“It meant a lot to me to be in a room full of people that could understand where I was coming from,” she said afterward.

Aside from providing a place for students with chronic illnesses to feel safe talking about their experiences, Chronically Awesome aims to cultivate an educational, informative environment, with the potential for monthly presentations or speakers.

Farah also hopes to promote activism for accessibility through the club. She hopes to continue this after graduating, which she had never considered before her diagnosis.

“I wasn't thinking about chronic illness; it wasn't something that was relevant to my life at all,” Farah said. “My direction for my career would not be going where it's going now (had I not been diagnosed). I want to work with people with chronic illnesses.”

Following a brief discussion of the goals of the group, Farah asked if anyone would like to play a game.

“Apples to Apples?” she asked, going through the options in the Women’s Center.

And with that, a game of Apples to Apples went on for an hour, without any mention of the chronic illnesses shared throughout the circle.

“(Farah is) developing a group of people who feel safe together, who want to relate to each other, who have stories to tell,” said Miller, the nursing dean. “But it isn't just necessarily disease-provoked — it's about other things, about having a chance to normalize.”

Meeting every third Monday of the month in the Women’s Center, Chronically Awesome is open to any student who identifies as having a chronic illness or condition.

“I think the support group shows what power intentional community can have,” Mary said. “We think of healing as being something that a doctor prescribes, and I think that that can be really important, but I think that we also overlook the kind of social ways that we can heal each other.”