Bureaucratic nonsense. Unnecessary stress. Lack of empathy.

Those three phrases summarize what FAU Business Services subjected me to my freshman year.

I had just been diagnosed with a chronic (i.e. lifelong) digestive disorder, gastroparesis, which limits what I can eat as most foods cause me severe pain. And because I lived in the freshman dorms, I was required to purchase a meal plan for the fall 2015-16 year.

Instead, I applied for a meal plan exemption, knowing the dining hall wasn’t an option.

Over the course of several weeks, I dealt with administrators who couldn’t care less that I was sick or worried I’d be forced to pay for a meal plan I wouldn’t use. I grew more and more frustrated over the extensive paperwork required to prove I had an illness preventing me from eating at the dining hall.

And while I was eventually approved for an exemption my freshman year, despite threats that I would still have to pay for a meal plan, I never wanted to repeat the process again (which is why I moved off campus the second I could).

But I wasn’t the only one.

Finding common ground

Sophomores Tracey Tobkin and Ashley Stevens went through eerily similar experiences.

Both women are full-time students at the Jupiter campus. And because they’re required to live in the dorms their first two years, they also had to purchase a meal plan.

Tracey, a bio major, was diagnosed with gastroparesis in December 2015 as well, quickly realizing she would need a meal plan exemption. The exemptions only last for one academic year, despite her having a lifelong condition.

Enrolling in FAU fall 2016, she first submitted paperwork to the Business Services office that November, getting rejected because her paperwork didn’t fit their standards.

Fulfilling their process is tedious at best.

If a student wants a meal plan exemption, they have to submit:

1. A personal statement detailing why they require an exemption, as well as how they will obtain, store, and prepare their meals every semester.
2. A doctor’s letter (on an official letterhead) detailing why the dining hall doesn’t meet the student’s dietary needs, and if food intolerances are involved, a list of all foods the student can’t eat.
3. Copies of dated tests performed that back up the student’s condition.
4. A diet the student will follow, including a three-day sample menu with meals and snacks. Two lists are also required: one of foods the student can eat and one of foods that need to be avoided. The plan has to be provided by a doctor.

While Tracey applied again in spring 2017 and was approved for the fall 2017-18 year, the process wasn’t easy on her mental and emotional state.

“The fact that the documentation required for the meal plan is so very specific and so very difficult to get because they seem so very nitpicky about it, makes it all the more stressful,” she said. “I don’t have the time, I don’t have the emotional endurance for that. I’ve been battling with them ever since I got here. And it’s obviously still a problem.”

When I spoke with Tracey, we were blown away that we faced the same mistreatment, each thinking we were the only ones.

We both faced multiple rejections, meal plan charges being applied to our accounts when we couldn’t eat anything from the dining hall, and a lack of understanding from Business Services.

Not to mention the stressful and expensive process of explaining to our doctors why they kept needing to rewrite letters for us.

If you’re not part of the solution…

This sort of mistreatment is supposed to be avoided under the Student Accessibility Services office, which ensures students with disabilities and illnesses receive equal treatment at FAU.

Both Tracey and I are registered with the office.

And while Business Services Manager Katarzyna Kielbasa said their office “works with multiple offices within the university including SAS,” Michelle Shaw, SAS director, told a different story.

When I asked Shaw if SAS has worked with Business Services in the past to ensure the fulfillment of students’ exemptions, she replied with a one-word answer: “No.”

…then you’re part of the problem.

As a follow-up, I questioned if Shaw believes Business Services’ process causes students unnecessary stress.

“No, students have to provide documentation to register for their academic and Housing accommodations.  Providing documentation for a food waiver is no different,” Shaw said via email.

And it’s unclear how many of us have experienced this sort of treatment. Kielbasa provided a cryptic answer when I asked if Business Services has received complaints relating to this process.

“When we receive a complaint, we address it on an individual basis,” she said via email.

$3,260 down the drain

Because we both have gastroparesis, Tracey and I experience extreme bloating, nausea, abdominal pain, weight loss, and exhaustion.

While Business Services works with FAU Student Health Services in assessing submitted paperwork, we only spoke with Business Services members, who weren’t exactly compassionate during the process. We both had numerous calls and emails with staff members who insisted we would have to pay for the meal plan because our paperwork wasn’t enough.

And it’s not as if the plan is affordable. The cheapest comes in at $1,630.50 per semester. And because Tracey’s exemption was rejected her first year, she paid $3,260 for food that made her sick.

“There were too many hurdles. I ate in the cafeteria but I was sick every day,” she said. “I would go home to my dorm, lie down in my room for several hours, and hide away. I couldn’t focus on my school work.”

And the required meal plan hurt her in more ways than one.

“With that, my family is not well off financially, and losing the extra couple thousand dollars in my account from the meal plan is not helpful, especially when I have to resort to certain dietary needs,” she said. “I have to go on an all liquid diet and those are certain fees I can’t afford in addition to the meal plan.”

Unfortunately, the treatment for gastroparesis is pretty limited. There are drugs that are supposed to help with digestion, but their positive effects are minimal and their psychological effects are dangerous. All we can do is avoid food that causes us pain and eat small meals.

So Tracey’s freshman year, a time she had looked forward to her entire life, was spent sick and angry at a system she was paying thousands of dollars for.

“It’s a daily struggle because it hinders my academic work and I can’t tell you just how devastating it is know that I’m still dealing with this … To try and be a student, something I feel very passionate about, I’m a very fond learner,” she said. “I’ve always wanted to be in the situation that I’m in now and I really can’t pursue it to the degree that I should. I experience many hours a day with pain and just trying to keep my body alive essentially, day by day.”

A turn for the worse

And while Tracey said she’s the happiest and healthiest she’s ever been, she wasn’t always that way.

Before she was diagnosed, she was bedridden and at one point, weighed only 70 pounds as she couldn’t keep any food down. Even getting up to shower and brush her teeth proved to be too difficult most days.

“I was pretty much left without treatment through and through, and unfortunately we just didn’t make any progress throughout it all, and I ended up suffering,” she said. “My body was kind of deteriorating at that point because my ability to eat just diminished over time and so I lost a whole lot of weight. I was in a lot of pain. I was pretty much bound to my bed. I was in critical condition, my body was wasting away and there was no way to really address it.”

The semester before she started college, she was checked into a hospital. Her condition had regressed to the point where she wasn’t able to get the nutrition she needed.

“I took a turn for the even worse, and I ended up being checked into a Miami hospital and what I did get was a feeding tube … That was actually very helpful because I was able to get nourished for a little while,” she said. “But then the gastroparesis symptoms still continued and I still had the extreme nausea and everything. And what actually happened is that I ended up vomiting out the tube. So that was out the window.”

Right now, she’s on an almost all liquid diet, occasionally being able to digest nut butter, fruits, and vegetables. She tries to eat only once a day in the evening. That way, she can sleep off the pain.

Eventually, she hopes to go into medical education. And while she finally was approved for an exemption, she agrees that it only made her situation worse.

Apathetic and unethical   

Pre-med bio major Ashley was diagnosed with celiac disease in middle school. Her condition, caused by an extreme gluten intolerance, leads to nausea, pain, fatigue, malnutrition, and rashes.

But once she cut out gluten, she went back to living a “a normal life.”

“A few months after I stopped eating gluten, my parents and I went on a 20-mile bike ride, that was nothing,” she said. “[Then I realized,] I was just really sick.”

That was when she could control her diet. However, once she enrolled in FAU in fall 2016, that option vanished.

Her first semester, she avoided going through the exemption process for one reason: the test “proving” her condition required that she eat gluten for two months.

So for almost half of the semester, she would need to be in constant pain, just to prove that she couldn’t eat at the dining hall.

“I refused to go through that test that’ll take two months out of my life, plus recovery time so three months. I don’t have three months out of my life to do that,” she said. “It’s not like I can do it over the summer, I have an internship, I have stuff to do … I have responsibilities.”

Because of this, she ended up paying over $1,000 for the meal plan her first semester, even though she never once ate at the dining hall.

Toward the end of the semester, she spoke with Angie Gifford from the FAU Office of the Ombuds. The department works as a neutral party if someone believes they’ve been mistreated or a process has failed them.

Ashley explained her situation, and Gifford said she would do what she could, eventually crediting the money back to Ashley’s account.

When Gifford called Ashley, she said, “I’m supposed to check if the school is being fair to you and this is incredibly not fair.”

When Ashley grew tired of paying for the meal plan, she attempted to get an exemption a year later, submitting a letter from her doctor saying she can’t eat gluten and requires a dining area completely free of the substance. However, her exemption was still denied.

“That should be proof enough for them. They were not caring,” she said. “They didn’t give a shit.”

Ashley added that she doesn’t understand why students with chronic conditions have to submit paperwork every year “proving” their illness.

“Do you want my body to check to see if it still has [celiac disease]?”

To this day, she still pays for the meal plan every year and eats in the dining hall as little as possible, saying she doesn’t have any other options. This is despite the fact that she’s constantly worried about cross contamination at the various food stations.

“Bureaucratic nonsense”

Tracey and Ashley met in their Latin I class in fall 2016, becoming fast friends and bonding over their respective conditions.

“She was trying to get a meal plan exemption because the gluten options were especially bad before 2018,” Tracey said. “There is a lot of cross contamination and she literally never knows if she’ll be sick after eating in the dining hall. She’s one of the greatest people I know and she’s having to deal with this bureaucratic nonsense as well.”  

Tracey said the only reason why her exemption was eventually approved was because she reached out to Ombud Gifford. But without her, Tracey said she was tempted to give up applying.

Ashley said that she still resents the way Business Services treated her.

“You also have to understand that the people who live here, they pay to go here, they have a stake in what you’re doing,” she said. “It’s like if [FAU] had stock, they’re completely ignoring the shareholders.”

And despite promises that the dining hall would have gluten-free options, Ashley said they’re few and far between.

“They assured me they would accommodate gluten-free food and they have gluten-free buns. That’s it … and then they said, ‘We have this new vegan bar that should be gluten free,’ and half the time it’s pasta.”

Ashley added that it isn’t all bad, saying the kitchen staff try to let her know when certain foods have gluten.

“The staff [in the dining hall] is fantastic, the people in charge are not.”

And while she greatly appreciates the accommodating kitchen staff, she said they don’t always know what’s in the food.

“I’ve been a lot more tired, very under the weather lately, but it doesn’t feel like I’m getting a cold. So I think overall, it’s just the build-up of having gluten, because there’s no way it’s completely gluten-free in the dining hall, it’s just not possible,” she said. “They can’t always tell me what’s in the seasoning or what’s in all of anything so I can’t always trust anything they say so I just have to go for it and hope.”

And it doesn’t help that the Jupiter campus food isn’t labeled allergen free. Foods with gluten, peanuts, and soy are mixed in with everything else, leaving it up to chance whether or not someone will get sick from what they eat.

One of my last questions to Business Services Manager Kielbasa centered around whether or not her office would be willing to change their process and remove the yearly requirement to submit exemption paperwork.

Here’s what she had to say:

“We are always open to improving the process and certainly will consider it. Our goal is to provide a meal plan program that can serve the needs of our student population. The exemption process is a very small part of the overall program. We are consistently looking at improved nutrition, meeting the needs of our vegetarian population, introducing gluten free options and the like. The goal is about ensuring wherever possible we can meet the nutritional needs of our student resident population.”

But as of right now, Tracey, Ashley, and I aren’t holding our breaths.

Kerri Covington is the editor in chief of the University Press. For information regarding this or other stories, email [email protected] or tweet her @kerri_marie23.