My Fight for Colleges to Accommodate Students With Chronic Illness

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At the age of 4, I was diagnosed with severe asthma and attention-deficit/hyperactivity disorder. During sophomore year of high school, I developed multiple allergies out of blue. I became allergic to corn, all tree nuts, and cats to name a few. Junior year became the ultimate battle for my health. In 2008, I could not tolerate most foods and vomited shortly after having a meal. I ate the same frozen TV dinner for two years because I could tolerate it. During this time, I became extremely ill and weighed only 95 pounds.

Most of the doctors had a hard time diagnosing my illness. Eventually, I discovered the source of my illness from a colonoscopy and endoscopy. I had an ongoing allergic reaction that wrecked havoc on my body. With patience and a specialized diet, I started to gain my weight prior to the start of my freshmen year in college for the fall 2010 semester.

My physicians recommended I relocate to Arizona since it is historically known to be therapeutic to asthmatics, so I decided to pursue a bachelor’s degree in aerospace engineering at Arizona State University. During my freshman year, my health significantly improved; however, it did not last. My body adjusted to the new environment and I had multiple relapses. I had two medical withdrawals for a series of asthmatic flares during the fall 2011 semester and 2014 semester. Throughout my undergraduate experience, I juggled a rigorous academic schedule with a medical schedule.

In my undergraduate experience, I had difficulty with a professor of one of my critical courses. Based on my program, I cannot take any future upper division engineering courses without passing this course and it is only offered in the fall semesters. During the beginning of the fall 2013 semester, I was treated for bronchitis at the hospital. I followed up with my professor regarding the current situation. I provided medical documentation and a copy of my homework assignment because I wanted to demonstrate to her good faith and my dedication to the program. I asked for a possible extension on our first homework assignment because I was very ill and did not have a chance to go over the homework during the teaching assistant’s office hours. She replied, “The graders will accept late homework, but with a penalty. You are probably best off to turn in what you have this morning.”

I decided to email the dean of the department about my concern regarding this course. I was allowed an extension; however, this action created a volatile environment. I failed the course and wanted to pursue a grade appeal. During a grade appeal, the student works with the dean designee, who served as a mediator between the professor and myself. However, I followed the dean designee’s advice to not pursue a grade appeal due to the lack of evidence.

In the fall 2014 semester, I took the course for the second time and missed two labs due to illness. Throughout the semester, I emailed my lab TA regularly to ask when it would be convenient for me to make up these labs. In short, my TA was not aware of my professor’s lab policies. As a result, I had to complete my lab reports during finals week so my professor could turn the grades in on time. Although I was given a two-day extension, my other classmates had two weeks to complete each lab report with assistance from the TAs. I did not have assistance from the TAs because they were studying for their finals. Ultimately, I failed my final exams and received a D for the course.

I decided to pursue a grade appeal again because I felt I was treated unfairly and had a better case. The grade appeal process took five months to complete. Although I won the appeal, I was exhausted and emotionally drained. As a result, I had to repeat the course for a third time.

In the fall 2015 semester, my professor decided to add a new policy to her syllabus. I believe this policy served as retaliation to my grade appeal of the lab reports in the previous semester. The policy stated, “Any student with more than one lab absence, regardless of whether the absence is excused or unexcused, will not receive a passing grade in the course.” Despite this new policy, I missed only one lab and passed the course.

It’s scary that I may not graduate due to financial aid regulations. “Satisfactory academic progress” is one criterion used for my financial aid. In order to receive financial aid, you must not exceed the maximum amount of credit hours for your program and have a pace rate above 67 percent. Currently, I am a senior and have five classes left until graduation. Unfortunately, I have exceeded the maximum amount of credit hours due to my medical withdrawals. I have to pursue a SAP appeal and explain my extenuating circumstances for prolonged graduation despite having a good pace rate of 82 percent. This is one of the problems that students with chronic illnesses may run into.

Currently, I am writing a creative non-fiction about college students living with chronic illnesses for my honors project. Throughout my undergraduate experience, there were no support groups on campus for this issue and I wanted to know if there were other students like me. I created a survey to understand public opinion, which I have received over 200 responses. Additionally, I have over 40 students to interview about their unique college experiences.

From my research, it seems most colleges have inadequate policies regarding college students living with chronic illnesses. One of the biggest challenges I found is absence policy. Many students I surveyed said their colleges and universities do not consider a medically documented illness as an excused absence. They rely on the professors to create their own policies for illnesses. On the other hand, most universes allow students to make up their assignments for religious accommodations or university sanctioned events. Unfortunately, my research showed that there are some professors who are not willing to give these students an opportunity to make up their missed assignments. As a result, the student may be forced to withdraw from the course or contact the dean and director of the department to reach a resolution.

Recently, I created a petition on change.org called “Conquer the Chronic Life: A call to action for parents and students.” The petition is designed to raise awareness and create a new bill. This bill would allow a medically documented illness as an excused absence at all colleges and universities, so the student has an opportunity to compete their program.

Additionally, I created the hashtag #CSWCI (college students with chronic illnesses) to create a community, which I hope will become an organization some day. I plan to release a book on May 3, 2016, which is World Asthma Day. I would like future college students to learn from my undergraduate experience.

girl wearing mask standing with rolling backpack
Monique wearing her mask and standing with her backpack on campus.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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My Daughter’s Asthma Symptoms Weren’t Like What I'd Seen in the Movies

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I have a relatively healthy daughter who would get colds twice a year that were hard to clear up. What started as typical symptoms would turn into a post-nasal drip cough that would go on and on and on.

Then she took a nose dive during what our family now refers to as the “Worst Spring Break Ever.” On Friday, we were packing to head out on a cross-country trip when my daughter developed a high fever accompanied by the strangest cough. My first thought was the flu.

Monday came along and she still had a high fever and a cough that seemed to have a wheeze at the end of it. I hadn’t heard her cough like that before. Off to the pediatrician. After the flu and strep tests came back clear, it was deemed a virus was affecting her lungs, and we were given an inhaler. I talked with the pediatrician about our trip. We were supposed to leave the following morning, but given my daughter’s temperature and the distance we were going travel, we were advised to stay home. Spring break was officially cancelled.

During the next two days, we made two more trips to the pediatrician’s office and one to the hospital. In addition to the inhaler, my daughter was given steroids for the cough and X-rays for pneumonia. By Wednesday, her cough was loud and deep, and that night she started coughing and didn’t stop. It seemed to shake the walls and floorboards in our home. No one could sleep. I thought to myself, “What kind of virus is this?”

The next morning, I called the pediatrician and spoke with a nurse, who could hear my daughter through the phone, and she mentioned whooping cough. Apparently around the age of 10, some children can catch whooping cough just as the vaccination begins to wane before the booster. The nurse told me to bring her in again.

We got to the doctor’s office, and my daughter’s cough was rattling off the office walls. Before our pediatrician could even walk entirely into the room, she said, “Oh no!” Then she told me she could no longer help my daughter, and she needed to go the ER. I associate the ER with life-threatening conditions. “Really, is it that bad?” I asked. The doctor grabbed both of my hands and answered, “Yes, she needs breathing treatments that I can’t give her.” “Oh,” I replied, feeling deflated.

At the ER, they gave my daughter breathing treatments and released us with a breathing machine they give to children who have asthma. The ER doctor indicated that perhaps I’m overreacting. I wanted to yell, “My doctor advised me to take her here. I didn’t just rush here because I’m worried about a little cough!” I held my temper and didn’t comment, but now I was mad.

It turned out that my daughter does have asthma. Remember the colds I mentioned earlier? That was actually a cough-variant asthma triggered by seasonal allergies and exasperated by cold viruses. We didn’t pick up on it at first because it only presented as a cough for her, not as the wheezing you might see in the movies. It took the “Worst Spring Break Ever” and my daughter’s asthma attack to realize she had it.

My daughter’s pediatrician, who is a former pediatric ER doctor, stands by her decision to send my daughter to the ER. Now my daughter takes multiple medications to help manage her asthma. She no longer consistently gets never-ending colds, but it’s been a learning process because her day-to-day asthma symptoms don’t present themselves the way I’ve seen them depicted in mass media. For her, the most telling symptom when she’s having problems is a cough, and it’s something we can no longer ignore.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the Student Who Said It’s Unfair I Have a Locker When Others Don't

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Today you saw me using my locker in the lab buildings at the university — the ones we aren’t meant to have on long-term loan and are emptied out after each session. You saw me putting the key back on my lanyard, putting my lab coat, folder and some other bits into the locker, shutting the door and walking out. I heard you mention to your friends how unfair it is that I get to have that locker and nobody else can. Well, let me explain why I have that locker.

I have a couple of health problems: brittle asthma, adrenal insufficiency, diabetes, supraventricular tachycardia (in other words, my heart goes super fast sometimes), I’ve had both hips replaced and am waiting on shoulder surgery. I also have a couple of life-threatening reactions. (I’m not actually in university right now, because I’m in the hospital following a life-threatening exacerbation of my asthma.)

collection of medical supplies and medications
Vicky’s medical supplies.

So, needless to say, I have to carry a fair amount of extra medications around with me. It’s what I like to call my “get out of jail free” kit. It’s basically the stuff that, if it really came down to it, would keep me alive. It sounds dramatic, but it’s kind of true. What you see in the photo is my EpiPen — for when I react to the balloons that are currently all over the student union, or have a massive asthma attack that goes from zero to 100 in five seconds — my steroid injection kit, some nebulisers to stop my airways from closing up when I have a reaction to someone’s deodorant, and some cereal bars for when my blood sugar goes dangerously low and I start getting grumpy and confused. That little orange tin has a lot of tablets in it, too. It really does start to add up. And that’s not including the device I have to carry around for my nebules or my blood sugar testing kit.

So I have to carry a lot around in my backpack. Also, don’t forget that I’m waiting for surgery on my shoulder, so carrying a heavy bag can add to the pain I get there and in my hips, which have both been replaced.

Add into that normal university stuff, like books, notepads, a pencil case, a drink and then whatever else I have in my bag. It gets heavy. I also like to keep spare supplies in there in case I manage to forget something important, so I’m not stuck at school without a rather important medication or piece of equipment. I think that’s fair.

But I know “it’s really unfair that there’s one rule for one person, and another for everyone else,” and I would totally agree with you that they should provide us all with lockers. But there are about 3,000 people at our university.

I know you didn’t mean it in a nasty way, or at least I hope you didn’t. But I hope now you can see why I don’t like having to carry a heavy lab coat, my folders and lab stuff around with me all day after a lab, and why I do need to have a locker. It’s important.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When a Stranger Suggested My Asthma Was All in My Head

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I was at a friend’s graduation party when a family friend of hers who I had never met before asked me if I had been a “sheltered child.” I assumed he meant had I grown up with parents with conservative ideals so I said yes. “Ha!” he yelled, “That’s why you have asthma. Amish kids don’t get asthma because they’re outside all the time.” But before I could tell him I misunderstood his question and I had, in fact, been an outdoorsy kid, he said asthma was a mental problem and he had read about a mysterious “study” that supposedly stated Amish kids have lower rates of asthma than the general population.

This attitude has followed me my whole life, from the teachers who had no interest in helping me catch up when I missed school because I was sick to gym teachers who made me run until I blacked out to prove a point.

I’ve tried every medication there is. I’m on the most expensive and, apparently, most generally effective medication there is for adults with asthma like mine. And my asthma is still not what most people would probably deem “well controlled.”

Sarah Kuhn.3-001

A lot of people do grow out of asthma, yes, but some people don’t. Your cousin’s asthma may not be the same as the kid next door’s asthma. It can affect people in different ways. And no, it’s not in my head. I didn’t make part of my left lung collapse when I was a 7-year-old kid mentally. My parents didn’t cause me to have it by sheltering me. And no stranger ever has the right to approach anyone with any illness and try to dictate their own story back to them, invalidate them or give them crackpot “advice” about a “magical cure” as if we don’t know anything about our illnesses.

After 27 years of living with a chronic illness that interferes with my daily life, I know the most valuable thing you can do for any sick person, regardless of what kind of illness or disability they have, is to listen and validate. To really hear what they’re saying and not to try to interject because some things you hear might scare you or make you uncomfortable. It’s the complete opposite of what most of us, at least me, have experienced our whole lives, but it’s a crucial step in tearing down this strange victim-blaming culture I’ve seen in the chronic illness world.

We’re all making the best out of what we’ve been given. It’s not all in our heads. It’s real and it can be scary. Trust me, I know. But acting like our symptoms and illnesses don’t exist isn’t helping anyone.

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These Free Comic Books Explain Asthma in a Way Kids Can Understand

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In the United States, about 7 million children have asthma, a lung disease that inflames and narrows the airways, according to the National Heart, Lung and Blood Institute. Even though so many kids are affected, not all children understand why some of their classmates may have a hard time during recess or gym class. That’s where Medikidz steps in. This organization created a series of doctor-written comic books to explain medical conditions to children.

Asthma_

Their latest series follows a 10-year-old boy named Savion as he learns the science behind asthma and the importance of proper treatment for the disease. The most recent book in the series focuses on the right way to use an inhaler.

Asthma_Book 1 Scene

Medikidz and its partner Meda, a pharmaceutical company, believe education is the key to helping people living with asthma. In the United States, there are more than 3,600 deaths due to asthma each year, many of which are avoidable with proper treatment and care, according to the Asthma and Allergy Foundation of America.

“One of the best ways to help prevent these unnecessary deaths is to ensure that patients and caregivers have a better understanding what causes asthma, how to recognize worsening symptoms and the importance of listening to your doctor and taking your medication on a regular basis,” Stuart Loesch, Vice President of Marketing for Meda, told The Mighty in an email.

The books are available for free, and anyone can get them online.

 Related: Explaining Epilepsy to Your Kids Just Got Easier

 

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When Non-Doctors Give You Medical Advice About Your Child

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I’m not a doctor. I haven’t even made it to Season 4 of “Grey’s Anatomy” — yet. However, my son, Branko, attracts a lot of attention from amateur doctors, people who think they know a thing or two about medical science. Here are a handful of medical clichés people have shared with me over the years:

1. I would never get the flu shot; it doesn’t work, and I would never give it to my kid.

Personally, I think that’s a really bad idea, but beyond that, I’m pretty sure I wouldn’t let my son out of the house if the flu shot were unavailable. For him, influenza means a hospital visit with the possibility of a surprise intubation. (And FYI, a surprise intubation isn’t any more exciting and fun than a planned intubation.)

If you don’t want to get the flu shot, that’s fine. But please don’t tell me about it, because I will literally obsess over whether you have sniffles or not until flu season is over. And please, never mention that the flu vaccine “doesn’t work.” For my own sanity, I need to believe that it works.

2. My best friend’s cousin’s daughter’s aunt had the same thing as him and she’s fine now.

Part of the reason why I started writing about my son’s medical condition was to make the complexities of his condition more clear, for both myself and the people in our lives. He has a one-of-a-kind genetic condition; there isn’t even a name for what he has. No one else’s symptoms are quite like Branko’s. Nobody. No one. Zilch.

By casually mentioning someone had something similar and is now “fine,” the severity of his condition is downplayed. It’s a bit insulting. Having bones like his — ones that randomly grow however and wherever they feel like — is serious business. It’s not a sunburn. It’s not a canker sore. It’s not even the same as when your friend, Sammy, had a cast for two weeks after falling off a Pogo Ball.

Also, what does exactly “fine” even mean? Is “fine” the same as being an average, healthy person who doesn’t need a mobility device? We aren’t really striving for a typical definition of “fine” over here; I suppose our definition is a bit more relaxed. “Fine” at our house means happy and stable, whether he’s in a wheelchair, a hospital bed or running around the backyard with no pants on.

3. All those chemicals and drugs can’t be good for him.

There seems to be a growing trend where completely sane and rational people, without a chemistry degree in sight, all of a sudden become experts on the chemicals in our daily lives. My son wouldn’t be alive today without plastics, drugs or vaccines. Please don’t be offended if you catch me rolling my eyes during most conversations about the avoidance of preservatives, food coloring, GMOs, sunscreen or Kraft dinners.

I once saw a person wrinkle her nose when I said we were giving Branko morphine as part of his pain-management plan. He had just had major orthopedic surgery on both legs, in which the bones were literally ripped apart and put in again with metal rods.

“Should you be giving morphine to a child so young?” she asked.

All of a sudden, I was frightened of “Big Bad Morphine.” I second-guessed myself at first, but my gut said stick to the plan. Turns out, doctors usually know what they’re doing. Morphine worked wonders for Branko, getting him through the initial, more painful period, and allowing his bones to heal.

4. It sounds like he’s been misdiagnosed. He should try going to (fill in the blank) hospital.

Uh-oh. Wait. Not only is this very confusing information, coming from someone who isn’t a doctor, but it also makes me nervous. Have I been doing everything wrong? Should I drive six hours to that other children’s hospital? Are there other surgeons with more experience who I should be seeking out? Why do I suck at being a hospital mom?

This advice came to me from another mom of a boy with a genetic disease. She felt strongly that Branko was misdiagnosed and had the same thing as her son.

Perhaps she felt we might have a stronger connection if our kids had the same thing. She had a negative experience at our hospital and felt a need to sway people from it. Some would definitely find her advice helpful; I found it a bit sad. We had a chance to bond over our shared experiences, to be special-needs-mom allies, partners in crime. But it didn’t turn out that way.

Over the years, I’ve become more savvy at deflecting medical advice from non-doctors. My secret: I kindly say “no thank you” followed by “I get all my medical advice from Dr. House and Dr. Grey.” That usually does the trick.

Jennifer Philp Zakic the mighty.1-001

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