Indiana Health Advocacy Summit Experience

BY MEGAN STANDISH

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The moment my friend Deanna Hedges told me about the Summit, I was on board. It was the first semester of college for me, and it was also the first time I had to deal with a chronic illness/disability by myself. I wanted to go to the Summit to learn how to advocate for myself and get the help I needed at school. I didn’t really know what to expect from the Summit, but it exceeded any expectation I may have had.

I connected immediately with the other delegates and felt right at home among these strangers who understood what I have been struggling with for over 3 years.

During the day, we heard from several different speakers. I enjoyed hearing from all of them, but 2 sessions really stuck out to me. The first one was when Samantha Miles spoke to us. Sam’s session really stuck out to me because she is a teen living with chronic illnesses, so everything she said was relatable. She was very well-spoken and happy to talk with us afterwards. I was also impressed by her courage and willingness to share her struggles with all of us.

 

“I connected immediately with the other delegates and felt right at home among these strangers who understood what I have been struggling with for over 3 years.”


The other speaker that I really connected with was Dorothy Lenard from Capability Coaching. Her session was focused on how to advocate for yourself in college and taught us about the differences in disability services between high school and college. There was a lot of things I didn’t know, and this was the session I had been hoping for.

I learned so much about accommodations in college and was able to apply the new information while trying to navigate college life.

The other part of the Summit I enjoyed was just the connections I was able to make with the other delegates. I have Postural Orthostatic Tachycardia Syndrome (POTS), which is a somewhat rare condition. I didn’t think that I would be able to find anyone at this Summit that has POTS as well, but I did! I also learned more about other chronic illnesses by talking to fellow delegates. We all became friends within a short window of 7 hours, and I was sad to leave the Summit that evening. Sneha and the other leaders were so welcoming and friendly, and I was so glad to have the opportunity to attend the Summit. I can’t wait to return in the fall of 2018!

Ulcerative Colitis Hijacked My Childhood

LIFE WITH – AND WITHOUT – MY COLON 'THE VILLAIN’ HAS NOT BEEN EASY.

By Sneha Dave

I didn’t choose to be me. But I do get to choose who I want to be.

When I was diagnosed with ulcerative colitis at age 6, I didn't know what those words meant, let alone the impact the disease would have on me.

I didn't know it would leave physical – and emotional – scars. I didn't realize that after being extremely ill for the majority of my childhood, I would face an entirely different world of challenges in the form of often-judgmental personalities, daunting tasks and things that would constantly conjure my past. While these scars have faded over time – I’m now 16 – they will always live inside me, telling a story so personal that even those closest to me wouldn’t understand. They do define who I am, no matter what sayings say to the contrary.

Ulcerative colitis is a chronic inflammatory bowel disease that directly affects the large intestine, and disrupts the entire body’s equilibrium.

It is a disease that could be called the most evil of villains. A person could be suffering terribly and you wouldn’t have a clue, as the disease often shows no visible symptoms. Don’t be fooled, though: More than 1 million Americans like me are affected – and counting.

Throughout elementary school, I was devastatingly sick. I had numerous procedures and repeated doses of steroids that made me look strikingly similar to a chipmunk. It's difficult to imagine now that a 7-year-old would be swallowing six large capsules daily – and tracking the number of times she went to the bathroom, day after day after day. That was the easiest of it though.

Middle school is when my disease gained serious speed. It was also the first time I realized there was no way I was ever going to experience life as others do. School became a gruesome place, punctuated by numerous bathroom accidents and severe embarrassment. I wasn’t bullied, but was constantly pummeled by questions about why I was barely at school, or why I got extra time on the rock project. School, however, was the least of my worries; I was focused on getting enough rest and somehow reducing the 20-plus bowel movements I endured each day. 

During 6th grade, I experienced pancytopenia – my first emergency situation – in which my bone marrow shut down. My hemoglobin, or blood protein, dropped to a dangerously low level of 4 and I was rushed to Riley Hospital for Children at IU Health in Indianapolis, where I quickly received a blood transfusion. My parents knew something was wrong when my tan face turned ghost white, and I was unable to speak more than a few sentences without gasping for air. This was the first of many emergency room visits. It became a cycle: My colon would torment my body so severely that we had no choice but to seesaw between home and the ER.

For years, I was plagued by symptoms that made life difficult. I couldn't eat. I developed unsightly skin nodules. I had excruciating headaches and unbearable stomach pain. This was my norm throughout much of my childhood, and my poor parents could do nothing but watch me suffer on the couch cloaked in a heavy blanket while the neighborhood kids gleefully played tag in the 70-degree heat.

The night before my first day of high school, I begged my dad for a potent stool-slowing medication so I wouldn't have as many accidents at school. I longed to be normal for just one day; the first day. My dad resisted because this particular antidiarrheal gave me fevers, but then caved because he couldn't stand to imagine the embarrassment I would face if I had multiple accidents on my first day of freshman year.

I started high school weighing just under 60 pounds and with a faint smile. Instead of jewelry, I wore tubes taped to my arm, through which a steady stream of nutrients helped artificially maintain my weight. There was certainly no teasing, but I knew my classmates were eyeing me. I had grown beyond my former ritual of wearing a jacket to hide the “line” in my arm.

Each week, I would go to Riley Hospital to get iron infusions – a place I now considered my second home, where I could visit my second family. Sickness became a way of life. I didn’t know what “healthy” felt like.

Meanwhile, we clung to false, waiting for an elusive cure. We thought we would find a way to finally tame this disease. My family and I battled it for years trying everything we could to spare me from surgery. We tried homeopathic treatments. My mom and I even went to California in pursuit of a treatment center boasting success with natural healing methods. All we gained was pain and lost precious time as weight continued to evaporate from my body. I was practically disappearing. This couldn’t go on.

In December of 2012, I underwent a colectomy to remove my entire large intestine. I remember feeling ambushed by the emotions swelling inside me as I walked, defeated, toward the operating room and looked back one last time to see tears rolling from my parents’ eyes. I woke up a few hours later with a giant tube in my nose and a parched mouth, but couldn’t have any liquids, not even a sip, until at least the next day.

Dazed and barely conscious, I was wheeled to my room: E9235. It was there that I would form an enduring friendship with a nurse, and get a new chance to live. I knew new adventures were ahead. And for the first time in years, I let myself feel optimistic.

I came to the hospital with an irreparably diseased colon and left with an ileostomy – about an inch of small intestine that protruded from my stomach, which surgeons created to help my body rid itself of waste.

When I got home, I felt overwhelmed. Paradoxically, though my colon was what had robbed me of my precious childhood and early teen years, I felt incomplete and uneasy about not having it. The emotional recovery, I recognized, would be much more difficult than the physical. Although in about a week, I was getting used to and enjoying life as I had never been able to before.

After this surgery, I regained my appetite and weight. I began sleeping through the night, a luxury that for so long had escaped me. My body was now getting a chance to grow again. However, this came with its own baggage of ileostomy bag changes to dispose of waste, leaks and strange noises the bag made.

After about a year, I had a second surgery in which my small intestine was built into a j-pouch (mimicking the colon). While I still needed an ileostomy bag, surgeons later re-connected the j-pouch to my bottom, enabling me to gain a bit of the normalcy I yearned to have.

Now, I no longer need to wear the waste bag and am getting stronger every day. But even this new “normal” comes with trouble staying asleep at night and frequent dehydration, since I can’t properly absorb water back into my body – the colon’s job. Infections pop up here and there, and I’ll need to undergo minor surgery frequently to keep my small intestine open, allowing waste to move through my body properly.

Overall, life has improved. I still struggle to understand why my childhood had to be spent mostly in bed or the bathroom – not outdoors with the others – but had we delayed the surgeries, my chance to develop into a normal teenager wouldn’t have been possible.

Through all of these struggles I’ve come to realize the value of life; to enjoy the small things that are invisible to most. Some of the worst situations really are blessings in disguise.

For me sickness is definite but hope will always be infinite.

My Experience at the Health Advocacy Summit

By Shahin Saberi

This event was one of those experiences that affects you in ways that are difficult to describe; it’s going to be tough, but I am going to do my best. To give you an idea of what it felt to me, I am going to put you in my head at a certain moment that was very memorable for me.

Samantha Miles, a teen just like me, was talking about her own struggles with chronic conditions. Her speaking skills were incredible, and the content of her speech was so enthralling that I had to snap out of a trance that I was being put in. It was so riveting because what she was saying was such a perfect combination of empowering, relatable, and true. I felt like I was getting a life lesson from someone who’s had years of experience with living through difficulty, but she was my age! I remember, when I snapped out of my trance, I looked around the room, not too obviously, just subtly. And I saw everyone else intently listening to her talk. And that’s when it set in.

This event was beautiful. It was bringing people from all around the state of Indiana, from different walks of life, different passions, different struggles. But at that moment, we were all together in our struggles.

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 Sam’s struggles were my struggles. Sam’s struggles were all of our struggles. And yet, she was doing incredible things, even while having to deal with hardships constantly obstructing her dreams. And she wasn’t the only one. Everyone there had been through fights of their own, for even longer than I have been fighting, and they were still on paths to success. They inspired me and made me realize that I am accompanied by people who, through their battles, have developed and matured into strong leaders and amazing individuals. Having ulcerative colitis allowed me to see the courage and strength exhibited by others with similar conditions.

 

This event was beautiful. It was bringing people from all around the state of Indiana, from different walks of life, different passions, different struggles. But at that moment, we were all together in our struggles.

 

Before Sam’s speech, I had no clue what to expect from the Health Advocacy Summit. Up until that day, it had always been my mother, my father, and me against my UC. It was lonely, but I wasn’t complaining. I figured, these are my problems, and I need to deal with them. The rest of the world isn’t interested. The Summit gave me the first experience of the opposite. As people poured their hearts out with some of the struggles they have endured and how they’re still standing, how they’ve been fighting their battles since birth, how they are leading initiatives and not letting their diagnosis stop them from pursuing their dreams, I was inspired. I was motivated. And, most surprisingly, I was proud to have a chronic condition.

 While the interactions with the other delegates are what had the most immense impact on me at the Summit, I also took a lot out of the speakers. The first speaker of the day, Louis Belch, gave me an insight into a world of which I was completely naive of beforehand: lobbying healthcare legislation. The concept of “making my voice heard” always seemed so perplexing to me, because, in a world this big and with politics so powerfully influenced by money and corporations, how could I possibly have a voice that matters? That’s been an internal struggle of mine for years, and it’s something I want to change, which is part of the reason why I want to go into health policy in the future. But one thing I took away from Lou’s talk is that there are ways, at least on the local level, of influencing political decisions. To me, this understanding was extremely encouraging. Beyond that, it has inspired me to become more educated on local legislators and lead initiatives to implement policies for the betterment of infrastructural elements that need it most.

Seven of the fastest hours of my life later, and the Summit was over. I sincerely left the facility a different person. I had met new friends, learned new ideas, and joined a new community. A community with whom I can relate to in a unique way, a community that doesn’t judge, and a community of future stars.

Originally, my ulcerative colitis diagnosis was a dismal disaster. Now, I can proudly say that my chronic condition has led me on a path that has changed me as a person, matured me as a man, and motivated me as a dreamer. I’ve learned that the worst can lead to the best.

How to Return to a Normal Life After You're Diagnosed With a Chronic Illness

By Sneha Dave

Advice on staying resilient.

There are really no words to describe how it felt to step outside the house and think that everything I'd gone through for the past few years had potentially ended. Although it was the end of many grueling years, it was the start of a new journey, and the start of new societal learning experiences.

It wasn't until my ulcerative colitis become aggressive that I became isolated from the society I grew up in. Even though I was diagnosed at age 6, my illness began to give me serious medical setbacks at the beginning of sixth grade. From sixth grade until about the middle of ninth grade, I lived a life that many would call completely isolated. Ulcerative colitis is a disease with devastatingly embarrassing symptoms, like frequent restroom usage and accidents. In my case, I became so weak that I needed assistance even to walk, especially stairs. A homebound and secluded life became a weight that brought my once talkative and bubbly personality to a halt for years. Although it has been two years since I transitioned to a new lifestyle, there are some things I've learned and continue to learn about how to get back to mainstream society after being chronically ill:

1. Interact with as many people as possible.

Although this may be obvious, it's much easier to say than it is to actually do it. I remember it took everything in me to start a conversation with friends and family with whom I had lost touch. The more I talked to people, though, the easier it became. Often, people won't understand your story – and that's OK, but the more attempts you make to converse with people, the more you come out of the shell.

2. Know that it will take some time. Be patient.

For some people, adjusting to society comes naturally. Butt for some individuals who are chronically ill, coming out of a societal isolation can be a challenge. For instance, there were moments when I returned to school full-time as a sophomore when the school environment felt overwhelming and caused me to be reserved. With patient effort, I was able to successfully integrate back into my social group.

3. Adjusting comes with stages.

There was a stage when I came home from school and was just angry because I couldn't handle school and the new workload I was expected to do. I was impatient, I struggled to cope with such drastic lifestyle changes and on top of that, the frustration of having a new ileostomy bag made my life harder to deal with. While there are worse scenarios than this, it's important to recognize that adjusting will not come in a week, a month or even a year. Looking back, there were several stages I went through before I recognized that I was becoming more comfortable with this "new" life.

4. Even though people around you can't see a transition, know it's a huge thing to have to go through.

People will never know the extent of your illness and how much it has impacted you physically and emotionally. Whatever disease it may be, coming back to the life you once called normal can prove to be more difficult than it seems as you step out of your illness. I learned this from the "shock" factor I experienced upon my return to school full-time during my sophomore year of high school.

5. Get involved with an organization you can relate to.

As soon as I got better, I immediately found ways to help out, and because I found there was not enough support for teens battling Crohn's and colitis, I founded the Crohn's and Colitis Teen Times – a nonprofit organization that helps teens with these two chronic conditions. This opened up opportunities to meet other people with Crohn's and Colitis. Furthermore, one of the easiest ways to get involved was with the local chapter of the Crohn's and Colitis Foundation of America. It was emotionally healing to help others, but it also gave me an opportunity to go to events I actually felt comfortable going to, and where I felt people understood my situation – or at least made an attempt to understand.

6. Don't wait for opportunities, because they can be life-changing.

A life-changing experience for me was when I was nominated to be a Riley Champion for Riley Hospital for Children. This honor may seem exciting to some, but for me it was also a defining moment. It helped me break the shell of silence I had for years, and it gave me a way to tell my story to others and relate to society.

7. Never, ever give up.

It's the small things that will be difficult to overcome, such as denial of opportunities for being sick or simply undesired results in spite of working hard while being sick. Everything that I've achieved so far, I've had to work twice as hard for. Generally, people have told me to take it easy, especially as I am still healing from surgeries and having procedures. I want to perform at levels that others are able to despite my situation. Never be disappointed if you are denied or don't get an expected result – it's happened to me and numerous others. The most admirable and successful people are those who have worked in spite of setbacks.

8. You can be physically strong. Give it a try.

In spite of all the battles you go through fighting your disease physically, it's worth trying to physically challenge yourself as much as your condition allows. I found that trying to get back in the game of tennis was a confidence booster. Though conditioning exercises often left me exhausted, they made me feel stronger and like I was getting back to a normal life again.

While most people may not think of adjusting to mainstream society as an actual problem, it certainly is – many people struggle to return to this "foreign" lifestyle. It is as imperative to be resilient in adjusting as it is to fighting a medical battle, because often this is harder than the physical pain of the illness. The most important aspect to keep in mind is that with time, your life will be put back together like a complete puzzle.

Reflecting on my Chronic Condition

By Shahin Saberi

“I am starting to come to terms with the chronic condition, and, while not letting it define me, am comfortable with letting it be a part of who I am.”

After sixteen years of living life as a healthy child, I was suddenly diagnosed with a chronic condition: ulcerative colitis.

It was the summer after my junior year in high school. I had just been in Iran visiting my extended family. After getting back to the States, three-quarters of the summer had flown by. While my fellow cross-country teammates had been training every weekday morning, I was spending time with family in Iran---I was surely going to have some work to do to get back into shape.

 After getting back to the States, I was sprung right back into the hard-working routine of a student-athlete. It didn’t help that “cross country camp” started on the weekend after I got back. This camp is when the whole team goes to Brown County State Park in Indiana, sleep in tents for a couple nights, and run miles and miles and miles through trails cutting through Hoosier National Forest.

 Of course, camp was a blast, as usual. Being with my teammates, playing football, listening to music in the woods, enjoying nature; what a time! But this ended up being an interesting experience for a number of reasons.

First, I got stung by a bee on my first run at camp. The welt grew quite large for a normal bite. The bite was on my calf, so when I ran, I could feel it sweltering painfully. Not off to a great start, this weekend. Then, one night, we were playing two-hand-touch football, and Eric (goddamn it, Eric) elbowed me in the mouth, making my mouth bleed. Two for two on bad luck. But it doesn’t stop there. It rained all weekend, and my friend and I were sharing a tent that wasn’t as waterproof as the packaging described. Everything I packed became soaked.

 At the end of the day, all of these predicaments were slight hiccups in life. They frustrated me at the time, but I grew past them, and now, I can tell funny stories about that camp. There were a lot of great experiences, too, like playing Mafia and watching the Mafia win in a game of 80 players, telling scary stories around a campfire, and more. But, this trip came with one thing that is more significant than all the rest. Something that I will not grow past---or, if you will, outrun (get it?). Let me tell you what that was.

The bathroom system in Brown County isn’t the cleanest. But you make do. One morning after a run, I went to the bathroom. After I finished, I notice that my stool has a lot of blood in it. I become worried. Maybe that hot dog I ate last night had some sort of pathogen in it? Or maybe I swallowed a bug while sleeping? Was that “bee” that stung me actually poisonous? Thoughts were racing in my head, but I decided to postpone my worries until after camp was over. After all, that’s a pretty embarrassing thing to say to a coach. In addition, I had no idea what this symptom meant. Never had I heard of ulcerative colitis or anything of the sort. I just thought it was some sort of infection.

 I eventually returned home and told my family. They took me to a doctor. I ended up getting a colonoscopy. From camp to the colonoscopy, I don’t really remember how things went. I don’t know if I did research and figured it out. I don’t know anything. But I do remember some things. I remember being on the trolley and looking around, seeing that everyone else there was old and I was the lone teen. I remember the GI doctor coming up to me after the procedure and telling me the results. “You have ulcerative colitis,” he said.

 I said, “What’s that?” And he explained. I don’t remember everything that he said, it’s all a blur. But I do remember one thing he told me: “It won’t go away. It’s chronic.”

 My mom started tearing up. Granted, my mother is very emotional, but I can get why she felt this way. My older sister has CHARGE syndrome, a very rare genetic syndrome that leads to a number of complications. My sister had to fight so hard against her disabilities. She was predicted to be unable to talk, walk, or eat on her own. Now, she can do all three. I am beyond proud of her. But that’s not the point. The point is, my mom had to go through a lot finding out that her first-born daughter has a genetic disorder. I had good health for my entire life, and when my mom heard that her other child also has a health condition, albeit much less severe, that will never disappear, I couldn’t imagine the emotional toll it took on her.

“I don't remember everything that he said, it's all a blur. But I do remember one thing he told me: ‘It won't go away. It's chronic.’”

 For me, however, it didn’t set in. I have a chronic condition, now, I should’ve been thinking. I didn’t think too much about my diagnosis. This doesn’t seem like a big deal. I didn’t realize that ulcerative colitis was going to change my life.

 I was 16 at the time. On October 26th, 2017, I turned 20. It’s been about 3-and-a-half years since I was first diagnosed. During these next years of my life, I graduated high school and began my collegiate career at Indiana University. I was a completely normal college student, balancing academics, extracurriculars, and friends. But I wasn’t like the other normal college student. I was balancing my student life with my “chronic condition life.”

My flares came and went. Medication after medication, failure after failure, side effect after side effect. Occasional triumph in remission. Figuring out what caused the remission. Before I knew it, it was back to a flare. Failure. Failure. Failure. I couldn’t seem to find an adequate treatment to keep me in remission. Even though we live in such a technologically advanced world with incredibly inventive medical innovations, my condition was unsolvable. It was like I was a puzzle that couldn’t be put together. I always thought, with the current state of medicine and technology, and the miracles you hear about it the news, my small problem should be easy to fix. But it turns out that life simply is not that simple. I spent multiple hours a week taking the public bus to downtown Indy so that I could go to appointments with my physicians (since Bloomington doesn’t have as good of doctors). Since medical offices are open during the typical workday of 9AM to 5PM and that’s when my classes were, I had to miss class quite often. This was hard, to say the least. Missing class. Having to catch up. Having to sleep. Having to stay involved. Having to put on a facade that nothing is wrong with me. It was hard. I look back and am proud of myself for getting through it, for sure. But wow, it was tough.

 

“I was balancing my student life with my "chronic condition life." My flares came and went. Medication after medication, failure after failure, side effect after side effect.”

 

Now fast-forward to sophomore year of college. I am still struggling to find the optimum medication. I have gotten most symptoms of my flares to subside, but some persist. I have a new doctor. I have new friends who have chronic conditions and can help me with advice and suggestions to deal with the symptoms. I am starting to come to terms with the chronic condition, and, while not letting it define me, am comfortable with letting it be a part of who I am. This all culminated in the Health Advocacy Summit on October 21st, 2017.

How to Cope With a Chronic Condition at College

By Sneha Dave

It wasn’t until the last couple weeks of high school that I realized the coming year, my first year of college, I would be on my own. My network of support and my parents would not be nearby.

As I sit in a coffee shop in the District of Columbia, I can't help but reflect on this past year, my freshman year of college. It's a transformative and influential time for most, and I can certainly say that it was more than this for me. I learned how to navigate the waters with my chronic condition, and once again I realized the importance of resilience to tackle both successes and challenges.

After living with a severe form of ulcerative colitis for more than 13 years, this was the first year I did not have my parents with me for every abdominal spasm and procedure. The transition was out of my comfort zone, but it taught me about independence. Below are some of the highlights of the year, as well as tips for living with a chronic condition in college:

Visit Disability Student Services before school begins. My mother pushed me to talk with the DSS services at my school so I could be established before I entered my freshman year. I wasn't too worried about registering with DSS, as I did not feel as though I would need it. In reality, DSS was a critical part of my school year. Registering before school starts is important because, after the beginning of school, there are a number of other things a student will have to worry about. The process is lengthy and it may require several phone calls to a physician's office. One of the perks of registering with DSS is that you can request a single room, which was a lifesaver for me, as I realized with my flare-ups.

Take the time to educate and communicate with your professors. If you've lived with a chronic condition for a number of years, this is probably something you already have experiences with. At the beginning of the year, I struggled with many episodes of inflammation and woke up some mornings with a feeling of paralysis in my abdomen. Subsequently, I missed my 8 a.m. class and lay in bed (in quite a bit of pain, I should add) and emailed my professor immediately. I was lucky, as my professor was always accommodating and willing to share notes, but having an upfront communication made it easier. It's often best to talk to your professor during the second week, after back-to-school commotion has eased.

It's OK not to tell everyone about your illness. The people I spent all of high school with knew of my history of being sick, but in college, almost everyone was a stranger to my illness. The second semester of freshman year I had a medical procedure every week, sometimes twice each week. While I am a huge advocate for people with chronic conditions, I find it challenging to tell people about my condition, because I really don't like the accompanying sympathy. Most of my peers are not aware of the medical challenges I lived with this year. On the whole, it's a good idea to educate your peers, but it can often be repetitive to have to explain every small detail.

Everything will not go as planned. I really struggled with this, as I wanted my freshman year to be pain- and symptom-free. I remember I was put on a high dose of antibiotics, which decreased my inflammation but caused a wave of new symptoms, including severe appetite loss and constant fatigue. Subsequently, I spent some more time getting evaluated at the Cleveland Clinic than I would have liked. I found myself constantly trying to develop time strategies to deal with my chronic condition, taking classes and managing a boatload of extracurriculars.

Don't let your illness be your excuse. The reality is unfortunate, but at the end of the day, very few people will take into account your struggles with chronic health conditions as you navigate schoolwork. I found myself having frequent spasms and still working very hard on a biology test. You may have to make some sacrifices in order to get extra rest or to catch up, but it can be done.

Learn to navigate around dining hall food. There's a way to bypass dining hall food and instead keep a refrigerator with food that you're able to tolerate. I have a very complicated diet, and the dining hall at my university was not able to accommodate my needs (understandably so, as my diet changes every few months). I had my doctor send a letter so that I could provide my own meals.

It's OK to feel alone – and remember, it's all a learning experience. Many of us have been fortunate to have our parents drive us to procedures and wait with us. After having a few visits to the Cleveland Clinic, I was prescribed treatment that required me to see a health care specialist at least once a week at an office near my campus. I often went to my procedures in between classes and came to my next class half asleep. It was a new learning experience for me, as I did not have family right there with me.

Freshman year was quite a learning experience for transition. While I often felt overwhelmed with my illness, I ended up learning quite a bit with support from a distance. I encourage all college students with a chronic condition to find ways to ensure that your illness will not stand in the way of your goals (something easier said than done, but it is possible).