Perspectives is a biweekly series exploring the various ways in which different students live the Vanderbilt experience.
Invisible illnesses are often misunderstood, due to their very nature. Those with invisible disabilities may appear perfectly healthy at first glance, but beneath the surface they are often dealing with hidden conditions such as mental illness, diabetes, ADD/ADHD, learning disabilities, chronic fatigue syndrome, epilepsy and many others. The Hustler spoke with three students who live with a wide spectrum of invisible illnesses. Their names have been changed to respect their privacy.
Seeking university support
Sarah is a freshman in the College of Arts and Science. Her daily life is constantly impacted by her invisible illnesses. In fact, she has six, when only listing the “main ones.” One is celiac disease, an autoimmune disorder involving an adverse reaction to gluten. Unlike those who choose to eat gluten free, Sarah must eat only celiac safe, meaning there there are no traces of gluten on the food and the utensils used to prepare it, at the risk of serious physical consequences.
“Vanderbilt’s quite literally the only school in the country that handles [celiac disease] very well,” Sarah said.
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Sarah was diagnosed with celiac in her junior year of high school, effectively altering the course of her college search. At many colleges she visited, Sarah found the accommodations for celiac disease unsatisfactory.
Some schools offered to exempt her from the meal plan, yet deprived her of access to a kitchen and stove. A microwave was the only way to cook her meals, and some schools did not even allow that. Furthermore, the cost of transportation for grocery shopping and the groceries themselves would prove burdensome. On the other hand, some schools with freshman living-learning communities similar to that of the Vanderbilt Commons offered to let her opt-out of freshman housing for an apartment with a kitchen. However, this option would deprive Sarah of the freshman experience and community which she craved. The schools that did offer dining accommodations often offered unreasonably limited options, such as one highly renowned institution Sarah visited.
“[They pointed] to a tiny little refrigerator, maybe half the size of the fridges we’re allowed to have in the dorm, and there’s half a loaf of gluten free bread in there, and that’s it,” Sarah said. “I was like, this is what you want me and every other kid with celiac disease to eat for three meals a day?”
Vanderbilt was my top school, and so that worked out really nicely for me, but I know some people who have had to compromise what they’ve wanted.
Luckily for Sarah, Vanderbilt offered reasonable accommodations. Once registered with the Equal Opportunity, Affirmative Action and Disability Services (EAD), Sarah and other students with food allergies are able to have their meals cooked by a separate allergy-friendly kitchen. After viewing the menu online, they order their food ahead of time, designating the time and place of pickup.
While other schools with similar food pickup programs offer services to all those on a special diet, Vanderbilt’s program is exclusive to those registered with the EAD. According to Sarah, this method is much safer due to the smaller volume of food being made.
“Vanderbilt was my top school, and so that worked out really nicely for me, but I know some people who have had to compromise what they’ve wanted,” Sarah said. “I’ve got a friend who wants to do journalism who’s got celiac, and we don’t have journalism, but this is one of her top choices because she’s got to eat. It just makes you really grateful for a place like Vanderbilt.”
Although the EAD has alleviated much of Sarah’s worry concerning meals, a lack of awareness and sensitivity on the part of the student body makes her condition more difficult at times.
“Spontaneity is really hard because I have to order a set time for my meals, and people are like, ‘oh, let’s go here,’ and I’m like, ‘I ordered my meal 45 minutes later in a different place,’” Sarah said. “Some of my friends were eating and they were finishing up when it was time to go grab my meal, and I was like, ‘Oh, you guys finish up and then I’ll go grab my meal I’ll eat with you,’ and they just left me there to eat alone.”
Besides celiac disease, Sarah also suffers from POTS, or postural orthostatic tachycardia syndrome. POTS causes her heart to have difficulty pumping blood all the way up to her head, resulting in low blood pressure, faintness and dizziness when she is standing up. Unfortunately, there is no treatment for this disease. However, a high sodium intake does help alleviate the symptoms.
Sarah’s care for POTS is based in a hospital in Texas. Fortunately, Vanderbilt Medical Center houses one of the top autonomic clinics for POTS, according to Sarah. The proximity of medical care was an important component in Sarah’s admissions decision. She is currently on the waiting list to be transferred into the program there.
“People come from all over the world to come to Vanderbilt to get treated,” Sarah said. “I’m in a good enough place that I don’t need any new treatment, but things flare, things change, so it helps that they’re right in my backyard. I just gotta get in.”
For the most part, it’s very hard for people to wrap their heads around this happening to me, so they [think] she’s a liar, she’s exaggerating. You have people who are like she’s doing that for attention.
Sarah’s other medical conditions include a recurring thyroid condition, Raynaud’s syndrome (a severe sensitivity to temperature changes), a chronic pain disorder and a corneal condition. Although her life is complicated by this combination of multiple illnesses, she attributes her sustainable quality of life at Vanderbilt to the EAD office.
“A lot of the attitudes of disability services at other schools were kind of like, ‘we decide if we think you’re sick enough to need this accommodation, regardless of what your doctor says,’” Sarah said. “And Vanderbilt’s attitude is if you can reasonably tell me what you have with evidence and why you need something, then you’re going to get it, and I got approved for everything I asked for.”
Due to the accommodations provided and her school-focused habits in high school, Sarah does not find the academic adjustment to be particularly difficult. Her disabilities do, however, bring up social challenges at times.
“I know people who hang out with friends all day, then they stay up till 3 a.m., and it’s okay,” Sarah said. “I will crash if I do not get 7-8 hours of sleep at night. I have to. So then I have to do homework all day, and that limits my social activities, and you feel like you’re missing out on the time to make friends because you have to sleep.”
Furthermore, Sarah struggles with the fear of the stigma her illnesses may have on friendships. Because her disorders are invisible, most students are not able to discern that she is sick.
“Part of the reason I’m doing this anonymously is no one really knows,” Sarah said. “It’s hard in a sense. Because people don’t know, they’re not considerate. My friends in high school, they were like, ‘Oh do you need to sit down if it’s a really hot day so you don’t pass out?’ But no one does that here because no one knows they need to do that. It’s no one’s fault; it just makes it harder because it’s one of those things my friends were very aware and they were pretty good at being alright, but that’s just part of the situation.”
I don’t ask that much of my friends. I have friends that go above and beyond, but being friends with a sick person is just understanding when they have to cancel plans.
The lack of physical evidence of her illnesses has caused others to doubt the validity of her conditions in the past.
“For the most part, it’s very hard for people to wrap their heads around this happening to me, so they [think] ‘She’s a liar, she’s exaggerating,’” Sarah said.
Unfortunately, Sarah said, a common struggle for many individuals with invisible illnesses can be uncommitted friends. She has dealt with friends who are unwilling to continue their friendship due to her conditions.
“You’ve got to get out or get in,” Sarah said. “You can’t pick up and leave. It’s better for someone to leave before they get close than to be like, ‘I don’t want this anymore.’ I don’t ask that much of my friends. I have friends that go above and beyond, but being friends with a sick person is just understanding when they have to cancel plans. Sometimes you have to do plans that are more low-key. We’re not asking you to move the moon. We’re not asking you to give me your kidney. We’re the ones handling it, not you. The friends I have are angels, but it sucks that you have to find out the hard way who they are. Be considerate and be willing to look beyond what people are really telling you.”
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Dealing with diabetes
Maddie is a first-year student at Vanderbilt University with Type I Diabetes. Because her body is not able to produce its own insulin, she has to get it from a pump.
“While Type 1 Diabetes has an impact on my day to day life, it doesn’t define me,” Maddie said. “Still, there are certain things that I do have to do to manage it. I have to check my blood sugar before I eat in order to give myself enough insulin.”
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Maddie monitors her blood sugar levels through her continuous glucose monitor, or CGM, and by pricking her finger several times a day. Her CGM and wireless insulin pump require her to always have a bag on hand. In addition to those devices, Maddie also carries around Skittles to provide fast acting sugar in case her blood sugar is low.
While Maddie does not feel like her Vanderbilt experience is too greatly affected by diabetes, she said always having to carry a bag with supplies is the greatest downside.
“Going from class to class is no big deal; everyone has a backpack,” Maddie said. “It’s the things like football games, concerts, and parties where people generally just bring their phones when I feel out of place. It was especially annoying at the Migos concert when I was told that my clutch was too big and didn’t count. I had to carry all of my diabetic supplies in hand and hide my purse in a bush. I left my Skittles in my purse and somebody stole them! I don’t know if this annoys all diabetics as much as it annoys me, but it’s definitely something we have to deal with.”
Maddie qualifies for accommodations like extended testing time and testing breaks with the EAD, since stress can potentially raise blood sugar. Maddie said she feels as though these accommodations are not necessary in her case and chooses not to take advantage of them.
“I’ve never [had testing accommodations] and I would feel a little strange asking for it,” Maddie said. “Some people do and there is nothing wrong with that. I’ve just never felt like I’ve needed it.”
The hardest part about living with an invisible illness is just that—it’s invisible.
While Maddie feels as though Vanderbilt handles her diabetes well, she does often run into confusion concerning Type I and Type II diabetes.
“Type I diabetes is an autoimmune disorder,” Maddie said. “I didn’t eat too much sugar, I’m not overweight (nor have I ever been), and I can eat anything that anyone else can eat. I can eat a cupcake if I want to; I could eat five cupcakes if I wanted to. But five cupcakes isn’t healthy for anyone, diabetic or not, so I don’t do that. What your body does automatically, mine does manually. That’s pretty much the only major difference.”
While having diabetes is definitely a part of who Maddie is, she does not let her illness define her.
“The hardest part about living with an invisible illness is just that—it’s invisible,” Maddie said. “You know when something is wrong, but no one else will notice unless you say something.”
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Finding validation despite stigma
Aubrey is a freshman in Peabody College who was diagnosed with depression and anxiety four years ago. Her depression makes it more difficult for her to complete simple, everyday tasks, and she goes through her day with a general sense of tiredness. Her anxiety causes a general sense of worry on top of her specific concerns about schoolwork.
While depression is often associated with a tendency for low energy and therefore a lack of motivation, Aubrey knows that she has to be even more motivated to accomplish what it takes to succeed while simultaneously managing her depression and anxiety symptoms.
“I’ve worked so hard to get where I am. I’m at Vanderbilt on scholarship, and I’ve had to work so hard to keep myself motivated in school,” Aubrey said. “I considered in my head, just because of my anxiety and depression, dropping out of high school, doing cosmetology or something because I worked at a beauty supply store. I considered going to school at home because I thought it would be easier to stay where I was. I considered not coming here, and so far I’m happy I did because this has been an incredible opportunity.”
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Thus, being a student at Vanderbilt provides Aubrey with a sense of triumph. Although she does experience some negative stigma surrounding her mental illness, she said Vanderbilt has been a good change in terms of community support.
“Even though people do still have that stigma of depression being negative, nobody has gone off on me or not wanted to be friends with me,” Aubrey said. “Not that I’ve told a lot of people, but the people that I have told have been super supportive and have been like, ‘I would never hate you because you’re struggling with mental health. That’s not a reason for me to hate you.’ That’s been a switch, actually.”
One of the worst feelings I have if people find out I have mental health issues is just being invalidated.
In addition to the support of her friends, Aubrey regularly goes to the Psychological and Counseling Center, or the PCC.
“It’s been really helpful. If I hadn’t been going, I’d be really struggling,” Aubrey said.
Overall, Aubrey said validation has been a key factor in living with her mental illness.
“In general, if you have a friend who has gone through something, validate them,” Aubrey said. “That’s the most important thing I could say because one of the worst feelings I have if people find out I have mental health issues is just being invalidated. That was something I struggled with a lot with my depression and anxiety. Am I a really valid human? I still feel that way a lot of the time.”
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