Many women will have ovarian cysts, and they’re usually just a few centimeters long. Christina Rees had two that were the size of cantaloupes.
As a girl, Rees was diagnosed with polycystic ovary syndrome, a chronic endocrine disorder where multiple cysts form on the ovaries.
Symptoms of PCOS include weight gain, acne, excess hair growth and irregular menstrual cycles. Further complications could include endometrial cancer or Type 2 diabetes.
Rees was rushed to the emergency room for abdominal pain, and she spent three days in and out of the hospital while doctors puzzled over her. When one suggested that her ovaries be checked, the hospital staff was incredulous – after all, she was only 12.
The doctor made a good call. Rees went into surgery the next day and tested positive for PCOS around six months later. She tells me that more young girls are starting to get diagnosed with PCOS, calling this tangent “a whole ‘nother topic.”
She’s 21 now – a student at MU – and is part of a growing generation of young adults learning how to balance chronic conditions with an erratic college schedule.
A growing issue
Chronic illnesses such as PCOS are persistent and long-lasting, and some are incurable. They’re also very common; according to the Centers for Disease Control and Prevention, chronic disease is the leading cause of death and disability in the US.
Experts estimate that 157 million Americans will have at least one chronic disease in 2020 – that’s nearly half of that year’s projected population. The prevalence of chronic conditions is also increasing in young people, partly due to advances in modern medicine that allow children with chronic conditions to live longer, fuller lives.
“That’s really a success story in terms of modern medicine,” says Terrill Bravender, a professor of Pediatrics and Communicable Diseases at the University of Michigan. Many conditions are detected early and are well controlled.
Awareness of certain conditions is also on the rise. “There are other kinds of chronic illnesses that may be identified more often,” he says, citing attention deficit hyperactivity disorder as an example.
According to the latest data from the American College Health Association, 5.7 percent of college students reported having a chronic condition in fall 2015. This data represents 22,931 students and 40 schools across America.
Many young adults with chronic diseases may not report their condition or perceive themselves as having disabilities, according to a commentary by Bravender. He says the true statistic is probably much higher.
Rees, however, notes that she does have a disability. As well as being sociable and well-rounded, she’s been an open book with her struggles in hopes that it’ll help others.
“There’s no cure, so it’s just preventative medication,” she says. For PCOS that means birth control, which Rees says was a tough medicine to take when she was younger. At Girl Scouts camp or sleepovers, “people just automatically assume bad things,” she says.
Some chronic diseases go hand-in-hand with other health issues; Rees has also been diagnosed with depression, anxiety, post-traumatic stress disorder and asthma.
As a student at MU with Hashimoto’s thyroiditis and depression, I wholeheartedly agree. The transition into college is no easy feat for anyone, but those of us with chronic illnesses have special health considerations thrown into the mix. When I’m open with my story, I also hope that it helps others to heal – and maybe even come forward despite the stigma.
A tough adjustment
Adjusting to college and adult life can be a vexing task for students with chronic conditions. These young people graduate high school at around the same rate as their peers, but the odds are stacked against them in college. Data from the National Longitudinal Study of Adolescent Health suggests that they’re only half as likely to graduate as their healthy peers.
The stress of transitioning through college might play a role. A 2015 study on transitioning through college with diabetes notes that this stage of adulthood is “characterized by exploration, relationship changes, self-focus, and feeling “in-between.”
College life allows students more autonomy. They’re free to decide what to eat, how often to exercise, or how much to drink. When faced with these choices, students with chronic conditions might have to take their health problems into consideration. For instance, it has extremely difficult for me to balance schoolwork and a social life with chronic fatigue – one prominent symptom of Hashimoto’s.
Russell Ravert is one of the researchers that conducted the diabetes study. An associate professor in MU’s Human Development and Family Science department, Ravert developed interest in young people with chronic illnesses after working with teenagers with cystic fibrosis.
He has also researched how students with chronic conditions handle the college lifestyle. “I’ve just been interested in how students with chronic conditions adapt and adjust to it,” Ravert says.
College students with these conditions aren’t just worrying about time management or adapting to a new environment – they also must learn to cope with their health issues in the absence of parents or familiar health care providers. This might mean switching doctors or dealing with insurance issues on their own.
“As adolescents transition into being young adults, almost all the markers for chronic illness care get worse,” says Bravender. He notes that students, parents and universities are often unprepared to manage chronic conditions and help these students transition.
Hectic college schedules might leave little time for students to worry about their health. One informant in Ravert’s diabetes study remarked that when she or he began college, she or he prioritized rushing to classes and tests before taking care of low blood sugar. This isn’t uncommon; students with chronic conditions are likely to experience hazardous health situations throughout college.
In his latest study that is under review, Ravert and his colleagues examined nine MU students with different chronic conditions: cystic fibrosis, multiple sclerosis, rheumatoid arthritis, Type 1 diabetes, asthma, depression, epilepsy and endometriosis.
He and his colleagues found that de-stressing activities were important to the students’ health management. “They talk about them as helping to manage their condition,” he says. However, this kind of “self-care,” or actions taken to improve overall health and dispel stress, can fall to the wayside with a busy college schedule. For this reason, it’s necessary to strike a balance between health, school, work and social activities. This balance is different for every student, but students with chronic conditions often need to be even more careful and prioritize their health.
Rees knows this all too well. She decided to attend college at MU and was thrown for a loop her first year. Professors and classes were demanding, but she didn’t seek help. It’s something she truly regrets.
Rees tried dealing with professors on her own but felt that some didn’t understand her needs. On some days, she physically couldn’t get out of bed. Her grades suffered, especially in attendance-based classes.
Rees was dismissed from MU in the spring of 2015.
She appealed her case successfully that summer and promised in her letter that she would register with MU’s Disability Center, which provides services to students with disabilities so that they can pursue an education. These services can include note-taking assistance, alternative textbook formats or housing accommodations.
“That’s how I’ve been handling classes this semester,” she says. Along with a flexible attendance policy, Rees also has testing accommodations that help to ease her anxiety.
MU junior Erika Navarrete had a similar college experience. She was hospitalized following a suicide attempt in 2014 and missed up to three weeks of school. This took a toll on her grades and physical health.
Navarrete was diagnosed with obsessive-compulsive disorder and ADHD after the incident. Before then, she had been diagnosed only with depression. Navarrete found clarity with the new diagnosis. “It was finally an answer to why I was the way I was,” she says.
She and I are two of many who consider mental illnesses to also be chronic illnesses. Chronic physical illnesses and mental illnesses have been grouped together by the World Health Organization.
“You need to advocate for yourself, but you also need to realize that you’re worth recovery, you’re worth achieving your full potential. I think that’s definitely this huge barrier that I had,” Navarrete says.
Eventually, she did advocate for herself and registered with the Disability Center. This semester, Navarrete has a reduced course load that helps her balance schoolwork and health.
Both Navarrete and Rees heap praise on MU’s Disability Center for being so understanding. “If it’s keeping you from being considered equal in getting an education, that’s what they’re worried about,” Rees says.
According to Barbara Hammer, director of MU’s Disability Center, students with chronic conditions succeed when they figure out how to balance health and college life, a process filled with trial and error. “It’s okay to know where to draw lines,” Hammer says.
It may take longer, but students with chronic conditions can accomplish the same things as their peers. However, Hammer notes that their disabilities might have to change the way they do things, which can be difficult.
The tip of the iceberg
Many chronic conditions are “invisible illnesses,” or conditions that aren’t physically apparent.
To explain this concept, some disability advocates use the iceberg analogy. The tip of the iceberg are activities others can see, such as the person going to school, grocery shopping or working. Many of the person’s daily symptoms, however – things like chronic pain, brain fog or fatigue – are hidden below the surface.
MU’s Disability Center calls these “non-apparent disabilities.” According to Hammer, more than 80 percent of students who access the office’s resources have a non-apparent disability, such as rheumatoid arthritis or fibromyalgia.
The Disability Center is featured on this year’s Office of Parent Relations calendar. The photo simply shows a student walking across campus.
“It doesn’t have a wheelchair, it doesn’t have somebody showing sign language … none of those things that people tend to think,” Hammer says. She stresses that people with both physical and non-apparent disabilities benefit from the center’s resources.
Some chronic conditions might be invisible to outsiders, but they’re definitely real to the person affected. And for this reason, invisible illnesses often come with stigma. Rees has had people that assume that she’s lazy – that her physical appearance says everything about her health. “There’s not a lot of understanding there. And with PCOS, a lot of people just think it’s an excuse,” she says. I have also experienced this. Friends or significant others often wonder why I’m exhausted the entire day even though I might have had 10 hours of sleep the night before. Invisible symptoms are harder to relate to.
Navarrete echoes this. “When you think of something like fibromyalgia, you can’t see it,” she says. “There are just a lot of assumptions.” She says that the concerns of students with chronic illnesses, especially invisible ones, may be chalked up to drama.
When I was diagnosed as a sophomore in high school, my health concerns were downplayed as excuses by peers and even adults. It must have been difficult to process that a young person – especially a varsity athlete like I was – could be sick.
Sometimes it just boils down to understanding. Rees says it might be difficult to understand why she should get testing accommodations or be treated differently. She adds that she’d rather have people ask questions and learn more about her condition than make assumptions about her or her health. There is more to her than what’s on the outside.
If researchers understand how college students with chronic conditions cope, they can help the ones that may be struggling. “We can incorporate that into education efforts and into the system itself,” Ravert says.
Additionally, students with chronic illnesses want to be more informed and have doctors that truly understand their illnesses. The participants in Ravert’s MU study wanted more information from health care providers on how to manage their conditions, and they were curious about coping strategies. They also said that they benefit from resources that are already available on campus, such as the hot tub at MizzouRec, coping counselors or “Stressbusters,” a group of trained students that give free backrubs.
The obstacle? Students aren’t always aware of these resources. Ravert suggests universities help students with chronic conditions find out what’s available.
Unfortunately, recent budget cuts took a toll on MU’s Student Health Center, which was forced to eliminate Stressbusters and a variety of other health services.
This isn’t just limited to MU. Student health centers are often targets of university budget cuts. “They’re not valued by the institution because it’s not a selling point,” Bravender says. Some college health services don’t generate money – they actually cost the institution.
If researchers find out which resources are helpful for these students and report their findings to university officials, certain programs could become mainstays on campus instead of being at risk for budget cuts.
Colleges are under a lot of pressure to not only attract top students, but to keep them around. That can only happen if they’re healthy. “I think this is an opportunity for health services around the country to really show their value,” Bravender says. He suggests that universities provide a health-services orientation for incoming students and their parents.
“I think being open and encouraging students and their parents to come in to student health during that orientation process is probably the best thing they can do,” Bravender says.
Students with chronic conditions also fare better when they’re surrounded by others who can empathize.
Ravert’s latest research also suggests that peer support helps students with chronic conditions cope in the college environment. In this study, participants remarked that they’d like to know other people on campus with chronic conditions. The kicker is that they’re just not sure where to find them.
An additional study published in the Journal of College Student Development suggests that college freshmen with chronic illnesses have an increased risk of isolation and loneliness. Their health-related quality of life also suffers. Few students with chronic illnesses in this study were connected to support – whether that be from peers or the college itself.
One possible solution? Support groups. They provide an accepting space to meet other students with chronic conditions, and participants can talk about their challenges and learn from others. They can grow.
MU students started a support group specifically for students with chronic conditions called Chronically Awesome Mizzou. The group’s first meeting was in 2014, and Navarrete became president in the fall of 2015. “It has kind of pushed me to become more involved on campus and kind of try to be an advocate,” Navarrete says. She’s constantly looking for ways to reach other students with chronic conditions.
During their second-to-last meeting of the semester, members of Chronically Awesome met in MU’s Ellis Library. The group occasionally brings in speakers, conducts mini seminars or does crafting activities, but this time the members simply relaxed and chatted about their day.
Group members often refer to themselves as “spoonies,” a term coined by disability activist Christine Miserandino. Spoons represent a unit of energy that can be used for any productive task, and once used up, they can be replenished only through rest.
The spoonies of Chronically Awesome aren’t expected to always have good health days. During the meetings, Navarrete reminds her peers that it’s okay not to be hyped up if they’re having a “low-spoon” day. They can let their guards down.
Members of the support group understand her experiences. Sometimes, they’ve been there. “It’s nice to be able to talk to people that I don’t feel like I’m complaining to,” she says. “I think everyone in the group has shared a lot, been vulnerable.”
Above all, members of Chronically Awesome and other students with chronic conditions just want to be treated with dignity, respect and understanding.
This is key. I feel strongly that when my healthy peers learn to listen or ask questions, their understanding will definitely improve. And through college, I’ve learned to strike my own healthy balance between school and life. Others at Chronically Awesome have done the same thing.
“We’re real, we’re out there,” Navarrete says.