Think of the word “disability”. What do you see? Many are more apparent than others, especially if you see them on wheelchairs or without limbs. But has the term “invisible disability” ever popped in your head? Many disabilities currently recognized in today’s society are completely invisible. This is the case of a teenager who has struggled under the hidden nature of her disability and the complications that entailed.
Ella Joicey was born in England, in a small town called Lincoln when she moved over with her family to Myanmar at the age of 14. She spent most of her high-school there and lived a normal life just like any other teenager. . .
At the start of grade 9, Ella was diagnosed with ulcerative colitis. A disease that is life long and causes long-lasting inflammation and ulcers (sores) in your digestive tract.
“It mainly affects young females at the age around 13.”
Ella lived her high-school life carrying this disability, where she slowly lost her freedom. As time passed, Ella began to feel the strain of her disability on her.
“What was really hard was not being able to see any of my friends, ” Ella said.
“It’s not who I am, but my personality felt like it was dampened on. I didn’t have enough energy to be that person.”
“7-9 pills a day.”
Ella’s symptoms for ulcerative colitis started to show around the end of 8th grade. She knew that something was wrong with her, as she felt her stomach “throbbing”. Although, she had little to no clue that she had a chronic illness.
“I thought it would go away. I was like, ‘you know, it’s fine,” she says as she reflects on the choice of hiding her symptoms from her parents.
“They didn’t really find out until we were on a summer holiday.”
At the time, Ella lived in Myanmar, where her town lacked the proper medical treatment she required.
“It was literally one clinic, on the top of this public hospital,” she said.
As such, Ella was forced into having to fly all the way to Bangkok every weekend.
“I was then tested many times until they finally found out what it was. I was given 2 pills a day, and then increased to 4 until it was about 7-8 pills.”
In the end, these pills had no visible effect “It didn’t work,” she says. She proceeded to take much stronger drugs and “was then put onto steroids for 4 months. ”
“You get sick more easily, you get tired a lot easier, it was just really bad.”
Her disability also significantly affected her diet.
“I had to change my diet, I couldn’t eat dairy, fruits, vegetables, I was basically eating rice and meat.”
After months, Ella’s struggles finally started to subside due to the effect of the steroids. “I started to get a lot better,” and was slowly released from the steroids. But the problem wasn’t solved.
“Even though I felt a lot better, things weren’t still that great.”
“Invisible disability.”
Ella has spent over a year of high school ever since she was diagnosed with this illness. What did her friends think? How did they support her? Ella simply said, “My friends had no idea.”
“My friends knew I was sick, but they had no idea how bad it was,” she said.
Why? “I just didn’t want to be different; I didn’t want them to treat me differently.”
Ella spent her entire 9th grade hopping in and out of school, where she missed out in many school events.
“I didn’t go to prom, nor my semi-formal, I didn’t go to any high school events,” she said.
“I did feel like I was left behind a bit.”
Ella considers her condition as an “invisible” disability, as her well-being was hidden from sight. She mentions how it is common for people to make assumptions from just glancing at a person.
“You could be in a hallway, and you see these people walking around you, and you can assume that everyone’s fine but in fact, someone could be suffering more than someone else,” she explains.
In the UWC community, troubles may arise in students’ and families’ personal lives, but it is difficult to support and empathize with them when students hide their struggles. This hidden nature of the disabilities may incentivize students to continue hiding their struggles, due to how they don’t want to be perceived as “different” and dislike the idea of people pitying them.
Ella is an example of how the school community assumed she was a “normal” student with poor health. And although this assumption might seem unsubstantiated, it is the direct product of Ella’s choice to hide it from her peers.
There is a prominent problem when it comes to people making unsubstantiated assumptions at face value. The facade that people carry disguises their real struggles and emotions. But the hidden nature of the disability is a probable incentive for victims to further “hide” their disability from others. This combination of the issues could be what lead to the emotional struggles Ella went through.
Moving Forward
After spending 2 years of her high school in Myanmar, Ella has moved to Singapore to a boarding house in UWC. Despite having not fully recovered, Ella did not want to be tied down by her disability.
“I had to take into control of my future, and what I wanted to do with my life.”
Now, Ella has seemed to have opened up about her disability and is even sharing it to people who are complete strangers like us.
“Ever since I have been in remission, I have been more talkative and more open about it,” she says.
“It’s not like I hide it anymore if they ask me about it, anyone can ask me, I am fine talking about it.”
This change of character could be the confidence she regained every since being in remission but it is also the action that she wants to take.
“Not many people know about these kinds of disabilities.”
“It is an issue and it’s not just an issue that’s happening to me, it’s happening to millions of people around the world.”
Ella continues her next 2 years of high school at UWC, where she enjoys doing the activities she couldn’t have done before, slowly filling up the holes that her past high school life left her as she continues to move forward.
“You just got to get through it, to get over it and move on, otherwise nothing changes…”