RCPD Student Shares His Experience with Invisible Illness

May 17th, 2017

Michael, a student who receives accommodations from RCPD, recently made this documentary highlighting his experience with an invisible illness. The short film helps others experience a typical day in Michael's shoes. Since it is mostly silent, our Chronic Health Ability Access Specialist, Caleb Sandoval, created a detailed written explanation for audience members with blindness/visual impairments to experience the film's message with a screen reader or friend.

Written by Caleb Sandoval

Edited by Allison Bertram

The video begins with a zebra print background, letter-boxed by two black bars.  In the middle, the term “Invisibility” is seen.  The “In” of the word are in parentheses. 

The video begins with a black background and a quote that reads:

“During their first year of medical school, students are taught that if they hear hoof beats, they are to think horses, not zebras.  In medicine, the term ‘zebra’ is used to refer to someone with a rare disease or condition.”

The video footage begins from the recorder’s first-person perspective, as he opens his eyes after hearing his phone alarm go off.  He rises and reaches to his right to snooze the alarm.  He again wakes with a deep sigh and dismisses the alarm a second time.  He then rises and walks to the far corner of his room where he chooses clothing from a tall, haphazardly constructed pile of clothes.  He enters the bathroom and turns on the shower.  He disrobes, exits the shower, selects a towel, and dries off.  He then puts on the clothes that he chose from the pile.

He reenters his room and goes to his closet where he picks a pair of shoes and other pieces of cloth yet unidentified.  He sits down on his bed and puts on 2 ankle supports. He then puts on a large, rigid knee brace on his left leg and a smaller cloth knee support on his right.  He moves to his desk and makes adhesive Velcro guards for both of his hands.  This process involves cutting thin strips of Velcro for each of his fingers.  He then adheres these pieces­–along with a larger, thicker strip–nearly halfway up his forearm.  He puts on an additional supporting glove on his left hand.  He then puts on two pairs of socks on each foot and a pair of rugged caramel-colored leather lace-up boots.

We are now outside and following the recorder as he enters his car.  He looks around after we hear the radio playing Top 40 music.  He travels some city streets and then arrives at the parking lot adjacent to MSU’s Old Horticulture Building.  He walks to the steel double doors and opens them.  He then walks through a single wooden door and then a set of green painted double doors.  He continues to wind his way through the building's halls until he reaches his classroom.  He walks past several tables where other students are seated with laptops.  He takes a seat near the front of the classroom and the professor.  He watches the professor articulate the project being assigned that day.  The recorder then looks deep into his laptop.  The image he sees comes closer and then dissolves.

We are now inside the computer image, watching what the recorder is doing online.  He is at Google's main page and conducts a search for “invisible illnesses on college campuses.”  He brings up his search results and clicks on an entry titled “Voices: What it's like to live with an invisible disability.”  He scrolls down the page...

The image fades to the black background, and we hear the recorder typing the following text: “For college students trying to balance their education and their health, invisible disabilities pose unique difficulties.”

We now see the recorder conduct another Google search.  This time, it is, “What is an invisible illness?”  We see a close-up of Google's definition of invisible disabilities which reads:

“Chronic illnesses and conditions that significantly impair normal activities of daily living.  In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.”

The recorder scrolls further down the page and selects a result entitled “Molly’s Fund Invisible Illness: But you look so good.”  He then goes to this page and finds a section entitled “What is an invisible illness?”

The recorder highlights some words within this section which read:

“According to one study, more than 125 million Americans have at least one chronic condition and nearly half of those have more than one.  These chronic illnesses often share one major characteristic: they are not visible to an onlooker; thus, the term ‘invisible illness.’”

The recorder then returns again to Google and conducts another search; this time on Ehlers Danlos Syndrome (EDS).  The results include some imagery that helps to define what this condition is and how it manifests.  A young African-American boy is shown with his left arm fully extended with his wrist a full 15 degrees below his elbow, indicating the presence of EDS.  The condition is rare, with fewer than 200,000 cases in the U.S. per year.  It affects connective tissue, primarily the skin, joints, and blood vessel walls.  We learn that its symptoms include overly flexible joints that can dislocate, and skin that is translucent, elastic, and bruises easily.  People may experience pain in their joints and muscles.  Also common are bleeding, double jointedness, easy bruising, heart murmur, joint dislocation, muscle weakness, physical deformity, poor wound healing, and wrinkles.  The recorder then selects the “treatments” subsection and looks over the results.

He then conducts a Google image search entitled “What does EDS look like?”  He selects an image of an extremely bent wrist and thumb with text that reads, “Physical Therapy for EDS.”  He looks at a few other similar images.

The recorder then Google searches “EDS at college.”  He selects a result entitled “Right of Passage: Living with Chronic Pain.”  The main picture featured in this post shows a young woman standing near some railroad tracks, looking off to her left as the sun hits her face.  She has a very small dog with her which she holds on a leash to her left.  We learn that this young lady is Kayla Furbish, who was only 14 when she was diagnosed with EDS.  Ms. Furbish will graduate college in 2019 and she deals with daily joint dislocation, as well as gastrointestinal, cardiovascular, and neurological problems that EDS causes.  She has undergone numerous surgeries, had infusions, and learned to live with chronic pain.

Along the way, she's had to give up a lot of things she used to do; tasks as simple as picking up a gallon of milk are now hard for her.  She says that because EDS is outwardly invisible, she appears healthy even though she's often sick and struggling to accomplish tasks most people take for granted.  She says, “I look just like everyone else.  I don't have any outward differences that alert the public to my disability, and because of that I often face judgment.”  

We see a picture of Kayla working with her physician in an exam room.  The picture’s caption reads, “Kayla and her mother rise before dawn every other week to go to Providence, Rhode Island, for a 5 a.m. physical therapy appointment.  Her physical therapist, Michael Healy, specializes in treating people with EDS.  “Having doctors and people who are familiar with my case close by was a big reason I wanted to stay local,” for college, Kayla says.  

We then see a photo that shows Kayla's hands and the several pieces of jewelry that she wears.  The caption reads, “Kayla's silver ring splints stabilize her hands and help her to write and type more easily.”

Kayla says, “I try to hold everything together externally rather than internally because it's not really there genetically.”  We scroll further down and see a picture from behind Kayla, as she pulls a blue carry-on bag by an elongated handle on her way to class.  We see that she is wearing tight fitting pants to accommodate two thick supportive knee straps and a pair of mid-calf supportive black leather boots.  The caption reads, “Kayla takes a trial run before the semester begins to see if she can make it to her classes on time and that her backpack isn't too heavy.”

“I know there's going to be times that are challenging, like when I'm walking around campus and my knees are back are hurting, and I feel like I have to push myself to keep up with everyone else,” Kayla says.

We see another picture of Kayla speaking to her mother inside the building she was walking toward.  The caption reads, “Kayla gives her mother, Cindy, a thumbs up after making it to class with a minute to spare.”

A picture shows Kayla at home in her room, the door to which is half ajar with a treble clef ornament hanging on it.  She has her hands behind her head and is reclining on her twin size bed with her small dog.  Her walls are decorated with photos and lights.  This picture is captioned, “Kayla and her dog, Jake, at her home in Watertown, Mass.  Living with EDS makes life challenging, but she's determined to work through the struggle.”

Kayla says, “I'm definitely excited to get to BU [Boston University]; I can't wait to meet new friends, take classes that focus on what I'm interested in, and start working towards what I want to do in life.”

The recorder again navigates away from this page and back to Google.  He runs a search for videos related to living with invisible illness.  He selects a result for a local NBC affiliate news story highlighting a young woman with dysautonomia.

At the conclusion of the news footage, the image fades to black and we again find ourselves in the recorder’s car.  He drives home and parks.  He exits the vehicle and grabs his backpack, turning to walk through his front yard and into his house.  He locks the door behind him and ascends the stairs.

We are now back in his room where the video began.  He sits down and stretches out his left leg.  We then see him get up and access a set of drawers full of medications and medical supplies.  He pulls his desk chair out and sits.  He grabs his laptop from his backpack and sets it on his desk.  

We are again transported into the computer’s image after he opens his laptop.  He is now at a page from The Michigan Daily looking at a story entitled “Disabilities on campus: problems and possibilities.”  He begins an online chat with his mom.  She asks him. “How is it going today? Did you have a lot going on this week?”  He replies, “Fine, busy week.  Just dislocated my knee.  :/”  She responds, “What did you do???”  He replies, “Nothing.  I just turned to put my backpack down.”  

While this chat is going on, the recorder continues to try to do his online research.  His mom says, “Not good. :-( You need to ice it!!  Did you take Motrin??”  He replies, “Yeah.  I took Motrin.  I'm going to ice it after I do homework.”  The recorder then continues his Google search for physical disabilities on college campuses and the students that have them.  His mom again says, “You need to ice it soon and probably elevate it!!!!  Don't walk around on it.  Rest it.”  He replies, “Okay.  I will.  I will talk to you later tonight.  Send videos of the dogs please.”  Mom says, “Okay.  Take it easy.  Good luck.  Hope it feels better soon.”  He thanks her.

We now teleport out of the recorder’s laptop as he closes it.  Again the quote appears on the black background, “During their first year of medical school, students are taught that if they hear hoof beats, they are to think of horses, not zebras.”

The recorder triumphantly and defiantly adds, “BUT WE STILL EXIST.”