Sophomore Caroline Lloyd said that some days, her chronic joint and muscle pain is too severe for her to get out of bed.
Lloyd experiences five chronic illnesses: attention deficit hyperactivity disorder; migraines that cause hemiparesis, or partial-body paralysis; hypermobile Ehlers-Danlos syndrome, a connective tissue disorder that causes pain and joint dislocations; hyperadrenergic POTS, which disrupts nervous system regulating processes like blood flow and breathing; and mast cell activation syndrome, a condition that causes recurrent allergic reactions to food.
She said her symptoms – which include joint and muscle pain and fatigue when blood flow decreases – cause her to forget “basic words” like “door” and “table” and make learning new class material difficult. Lloyd said she turned to Disability Student Services to receive less rigid assignment deadlines and more flexible attendance requirements to avoid penalties for missing classes.
In interviews, 10 students with a chronic illness said their symptoms often hinders their ability to keep up with schoolwork and participation in student organization activities. Students said their academic and social experiences may differ from their peers, but they have found other ways to find community on campus.
The Centers for Disease Control defines chronic illnesses as conditions that require ongoing medical attention or limit daily activities for at least one year.
“This causes chronic fatigue and can leave me unable to do much of anything due to my symptoms,” Lloyd said in an email.
Accommodating student needs
Tracy Boswell, the director of administrative services at the Colonial Health Center, said DSS staff offer primary care services and collaborate with specialty health care providers to support students with chronic medical conditions.
CHC staff provide treatment for acute and “certain” chronic conditions, women’s and sexual health services and referrals for specialty care, according to the CHC website.
Boswell said the center’s staff members encourage incoming students with chronic medical conditions to submit medical records to the CHC prior to arriving on campus so the CHC is aware of their diagnoses. She added that extending specialty care services is “crucial” for students who receive diagnoses after starting school.
“In the CHC, students are treated according to the standards of practice and then referred for specialty care either to the Medical Faculty Associates or a myriad of other expert providers in the field,” Boswell said in an email.
Junior Avery St. Onge said one week after being diagnosed with Type 1 diabetes last spring, she visited the GW Hospital because she was experiencing symptoms of diabetic ketoacidosis – a life-threatening complication that causes the body to produce too much acid in the blood and burn fat for energy when insulin levels are low.
St. Onge said she reached out to DSS for approval to bring a blood sugar measuring device into class and exam rooms. She said she needs special approval because many of her professors have strict anti-technology policies during class and exam times, and her device beeps loudly to warn her when her blood sugar levels are decreasing.
St. Onge added that her diabetes does not substantially impact her daily life so long as her condition is well-managed, but she needs her device to track blood sugar levels.
“When I first got it, it was weird, because I didn’t want to burden people with that news,” she said. “But now, I’m a lot more comfortable with it and I don’t mind telling people.”
Sophomore Nicole Melnyk – who experiences fibromyalgia and connective tissue disorder, both of which cause chronic joint pain – said her DSS accommodations allow her to miss class without repercussions and take exams in a private room with extended time.
She said DSS currently relies on students to tell staff members what classroom accommodations are best for them, but staff should take a more active role in helping students determine what accommodations they need.
“For students with disabilities, the difficulty and stress of dealing with college while managing our illnesses is so much already, it would be very beneficial for the school to take some of this work off of our hands,” Melnyk said in an email.
Balancing health and social life
Sophomore Saramarie Puzzanghera, who experiences chronic migraines and a connective tissue disorder, said she is an executive board member in student organizations like the Engineers’ Council. But she said committing to student organizations can be difficult because meetings are usually held late at night, and she needs a sufficient amount of sleep to function during the day.
“It’s hard enough if you’re healthy, but if you’re not, that’s not an easy thing to do,” she said.
Sophomore Callie Ingwerson said she experiences hypermobility – weak ligament connections that cause chronic pain – and eosinophilic esophagitis, which causes recurrent allergic reactions.
Ingwerson said she spends a “significant” amount of time cooking her own food to avoid allergens at local restaurants and going to the gym to combat her muscle weakness. She said that while the tasks take time away from studying and participating in student organizations, addressing her self-care needs helps her maintain a social life.
“Last year there were a lot of times where I chose to stay in for the night rather than risk hurting my back or getting sick,” Ingwerson said in an email. “I opted out of extracurriculars because I knew I needed more time to rest.”
Junior Mackenzie Flynn, who experiences rheumatoid arthritis, fibromyalgia and undifferentiated connective tissue disease – which causes the immune system to mistakenly attack body tissues – said her illnesses sometimes keep her from going out with friends.
“Sometimes I don’t have the energy to go out or I’m dealing with a flare up regarding my illness and it’s just not in my best interest to go out because then I’ll pay for it the next day,” Flynn said.
She added that student organizations like RARE GW – a community support group for students with rare diseases in which Flynn serves as the co-policy director – and the Disabled Students Collective provide students opportunities to discuss their challenges with other students who experience some form of chronic illness.
“Finding a social group on campus that you can connect with and that understands everything that you’re going through has been so pivotal in my college experience,” Flynn said.
Lia DeGroot and Paige Morse contributed reporting.