CSU Spoonies Help Students with Ehlers Danlos Syndrome

Students with chronic health conditions can get support from the Colorado State University “Spoonies” and the CSU Chronic Health Mentoring Program. We applaud these programs and hope they can serve as a model for other universities. 

by Amanda Thompson.

CSU Spoonies, a student organization dedicated to supporting students with chronic health conditions, met on Monday, Sept. 22 in the Behavioral Sciences Building. (Photo Credit: Jillian Keller)

“Imagine a typical weekday for a college student. They go to classes, study, hang out with friends and participate in other leisurely activities. Now imagine for each activity the student does, from merely getting out of bed to brushing their teeth in the morning, an enormous amount of their energy is lost. 

This is what people who are living with a chronic health condition experience.

CSU Spoonies, a recent on-campus group, was started by Julie Hill, an instructor in the human development and family studies department. Hill said the group has three main objectives: to provide a safe and supportive environment for students with chronic health conditions, advocate and raise awareness on campus and fundraise for various chronic health issues and conditions.

Hill was diagnosed with multiple chronic health conditions in 2011 after two years of symptoms. She said she was inspired to establish the group to create understanding about the struggles and challenges individuals face when they are diagnosed with chronic diseases.

“I was diagnosed [with Ehlers Danlos syndromes] in January 2011 after nearly two years of searching for answers for the cause of my joint pain, laxity and frequent surgeries,” Hill said. “Unfortunately, my diagnosis led to the end of my short career as an early childhood special education teacher, which was my dream job.”

Miranda Epperson, CSU Spoonies’s secretary and junior human development and family studies major, lives with multiple chronic health conditions including Celiac disease and chronic fatigue syndrome. Celiac disease causes damage to the small intestine when glutenous foods are consumed, and chronic fatigue syndrome is a disorder that causes symptoms such as muscle pain, weakness and impaired concentration.

“It is truly difficult to understand until you’ve experienced it yourself,” Epperson said. “Your resources of energy and stamina are often limited, and although you may appear fine on the outside, often you are living through pain, nausea and fatigue, yet choose to persevere anyway.”

Epperson said she is excited to now be part of a group that understands and relates to her. She said “The Spoon Theory,” by Christine Miserandino, is where CSU Spoonies gets its name.

The story, which walks through a conversation between Miserandino and her friend, gives an accurate description of what it is like to live with chronic health conditions.

Miserandino tells her friend that a healthy individual has an unlimited amount of energy, which she represents with spoons. People with chronic health have to constantly think about how many “spoons” they have, in each activity that they do, including waking up.

“You don’t just get up,” Miserandino said. “You have to crack open your eyes, and realize you are late. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”

At the end of the day, Miserandino’s friend was left with no more spoons.

Alyssa Reinhart, equine science and business senior and cancer survivor, said that living with chronic health can come with a stigma, and providing awareness on campus can counteract this.

“It’s not bad to have an issue or health condition,” Reinhart said. “We want students to come forward and get the support and understanding they deserve.”

The Chronic Health Mentoring Program, sponsored by ASCSU, is also a resource for those with chronic health conditions. This program provides mentors, who have also lived with chronic health, to students currently dealing with chronic symptoms. Reinhart is one of the mentors involved in the program. Students are welcomed to apply for a mentor online.

Andria Vance, CSU Spoonies’s president and senior human development and family studies major, hopes that CSU Spoonies eases the burden of finding individuals who could also relate to those with chronic health conditions.

“We can’t change that stigma overnight, but we hope that we can make a dent in it by educating others and giving individuals with chronic conditions back the voice that they so deserve,” Vance said.

According to Vance, being in college and away from home may leave one feeling vulnerable and isolated, but CSU Spoonies offers a community with individuals willing to support and understand one another.

“We just really want people to see that they aren’t abnormal and there is a whole community of people going through similar struggles,” Vance said.

CSU Spoonies conducts meetings at 6 p.m. on the second and fourth Mondays of each month in room 457 of the Behavioral Sciences Building.”

College is a challenge for all students. It is vital that those with chronic health conditions can get support!  We applaud the Colorado State University “Spoonies” and hope that programs like this are duplicated at other universities.   

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