We would like to give the BIGGEST thank you to the Cystic Fibrosis Foundation for making us an awardee of their 2019 Impact Grant! 🎉We are so honored to receive this grant and plan to use it to create virtual components to our events which will allow patients who are unable to attend our events in person the option to attend and participate remotely wherever they are. Once again, thank you to the Cystic Fibrosis Foundation! With your support we will be able to bring even more young adult patients together and ensure that no one is left behind 💜
SAN FRANCISCO - July 22, 2019. Registration is now open to patients ages 13 to 30 who live with a chronic or rare disease and would like to attend one of the free events in California, Indiana, or Texas. The events are hosted by Health Advocacy Summit (HAS), a non-profit organization which facilitates community events to help educate, empower, and connect patients.
The 2019 lineup includes:
San Francisco (September 21st, 2019), REGISTER HERE.
Indianapolis Indiana ( September 28th, 2019), REGISTER HERE.
Edinburg, Texas (October 19th, 2019), REGISTER HERE.
These events are free to those who wish to attend, but space is limited.
“This is an opportunity to connect with fellow patients, gain valuable information and resources from health professionals and take part in empowering discussions with influential activists from the chronic illness community,” says Sneha Dave, HAS Executive Director and senior at Indiana University.
Dave, who has lived with severe ulcerative colitis since the age of six, decided to create an advocacy event in 2017 during her freshman year for students like her, coping with a chronic condition while juggling school, work, and independence. The event was so successful, she decided to start her own organization to help fund events like these across the country.
The organization’s first summit brought together 14 students and six speakers from across the US. For many attendees, this was their first time interacting with fellow patients their own age.
More events are planned for 2020, including one in North Carolina.
For event details and registration please visit www.healthadvocacysummit.org. When registering, attendees can make accommodation requests, view the event schedule, and read additional information on the venue location and speakers.
The Health Advocacy Summit team is dedicated to improving the lives of young adult patients through their events, online support networks, and programs. To learn more about HAS please visit www.healthadvocacysummit.org.
ABOUT HEALTH ADVOCACY SUMMIT
The Health Advocacy Summits are daylong, no-cost events for young adults (between 13 and 30) with chronic and rare diseases. We want to enable our attendees with the support, knowledge, and skills to become strong advocates for themselves and their communities. Their mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. The Health Advocacy Summit is a recognized 501(c)(3) nonprofit organization. To donate, visit Securely Giving.
Learn more at www.healthadvocacysummit.org
Operations Director, Health Advocacy Summit, Inc.
By Sneha Dave
Dreamers are given the gift to believe, and for me believing became life-changing.
I came home from the hospital after losing my entire large intestine in a hard fight with ulcerative colitis. The next day, I gave up, because I felt that I had lost. One week later, though, I received a transformational gift. I am not sure where that gift came from, but it was a fighting spirit.
I have always had an incredibly supportive family, but I had no one who could truly relate to what I was going through, and I felt alone in battling ulcerative colitis. Not wanting others with chronic health conditions to feel alone in their fight, I decided to get into advocacy. I also became an advocate because my best friend died of osteosarcoma – a cancer that starts in the bones – and the chronic inflammatory bowel condition Crohn’s disease, and because I lost my childhood to ulcerative colitis. I started a nonprofit organization, the Crohn’s and Colitis Teen Times, became an inspirational speaker and began volunteering to support individuals with chronic conditions.
Becoming an advocate can be as easy as opening up about your illness and sharing your story to educate others with the same condition. Here are some reasons why you should be an advocate:
Being an advocate is simple. The best way to advocate is to not be shy about your medical struggles. I used to have numerous accidents and frequently have to use the restroom, both of which are extremely difficult to talk about, especially with teenagers. In middle school, my peers did not know I had ulcerative colitis, or that in eighth grade I had a peripherally inserted central catheter, or PICC, line under my jacket. In ninth grade, I began telling people about my illness and it became easier for me to attend school, because people understood. While the sympathy I received got repetitive, increasing awareness about a disease was, in itself, very gratifying.
You will gain a great support system. When I recovered from a flare-up of ulcerative colitis, I became involved with my local chapter of the Crohn’s and Colitis Foundation of America. I met a number of people whose medical journeys were similar to mine. I was able to relate to so many people, and I was able to find out about an amazing camp for kids and teenagers with inflammatory bowel diseases called Camp Oasis. When I publicly share my story, even audience members who do not have IBD become a part of my fight. Educating people has been amazing, because I feel understood, and I hope that's created greater empathy for people with these diseases.
You will heal emotional wounds you thought you didn’t have. I have always taken my disease in stride and generally tried to remain positive. However, coming out of my first major surgery, I felt lost returning to school full-time and adjusting to mainstream society. I was emotionally wounded. Meeting people with similar stories was inspiring because I saw their accomplishments and success in spite of the road blocks created by this illness. I realized that there was a life beyond recovery and treatment.
It’s public service. Advocacy serves your own community well through education as you share information on the barriers and opportunities created by your illness. You will feed off the inspiration you give to others. I truly enjoy speaking on behalf of Riley Hospital for Children at IU Health in Indianapolis at Children’s Miracle Network Hospitals' dance marathons to raise money for the hospital that saved my life. Whether you believe in volunteerism or not, it's truly amazing the impact your experiences can have on others.
It will change your attitude. I have always equated optimism to perspective. As I met more people while attending numerous events, I became aware of how much worse other people have had it. My best friend, who I met at an education conference, and who passed away, constantly inspired me to have an optimistic view on my own disease. Meeting these people and forming friendships became a reason for me to fight harder with my ulcerative colitis. Instead of giving up because of my disease, advocacy became a way for me to be inspired to live life fully.
You’re on your way to helping find a cure for your disease and others. When people hear your story they feel inspired to contribute to finding cures. When you share your journey with your disease, it inspires others to raise funds for good causes. I speak at many Children’s Miracle Network dance marathons to raise money for my children’s hospital, Riley Hospital.
So How Can You Become an Advocate?
Start by contacting your local organization that advocates for your illness, and share your interest in volunteering. If you do not have one, create your own group! Engage the one or two people you may know with your same condition or health challenge.
Social media is a great way to follow people going through similar struggles, and to collect and give tips without leaving your home. It can be extremely difficult to find people in your area, as I struggled with that because many people are not completely open about their illness. Furthermore, if you find someone who is insensitive or uneducated about your medical circumstances, speak up. This may, in some instances, even include sharing your perspective with medical professionals.
Come up with a unique idea that will garner attention and in return help people. I created the Crohn’s and Colitis Teen Times, which is a nonprofit organization that provides support to not only individuals battling inflammatory bowel diseases, but all chronic illness sufferers. This is one way you can create that fundamental support system needed for almost every chronic illness. There are so many platforms for advocacy through social media, YouTube or simply educating others about your illness.
It’s my desire to see more people talk about their illness to raise awareness and create more empathy for other individuals with similar conditions. While I longed to be a “normal” teenager, I realize that my struggles led me to this great gift of advocacy.
You are never too old or young to raise your voice for not only yourself, but for many others who are in genuine need of support. Don’t forget that advocacy is a big word with small origins.
Indianapolis, IN – On May 24, 2019, the Health Advocacy was featured in Rural Health Models & Innovations, a national collection of successful rural health programs and interventions maintained by the Rural Health Information Hub (RHIhub).
The Health Advocacy Summit provides advocacy resources for young adults with chronic and rare diseases in Indiana, Texas, California, and North Carolina. The program’s mission is to create events across the nation that empower young adults with chronic and rare diseases to become advocates and change-makers in society
Since 2017 the Health Advocacy Summit has facilitated events in three states, including Texas, Indiana, and North Carolina with California being added in 2019. Health Advocacy Summit has partnered with organizations and advocates in the chronic and rare disease space to provide advocacy resources and connections for young adults.
“We are really trying to create outreach to an often forgotten demographic, young adults with chronic and rare diseases. We are especially interested in connecting and providing support to this population in rural communities, where resources and a network of support may not be as accessible,” said Sneha Dave, executive director of Health Advocacy Summit.
The Health Advocacy Summit was selected by RHIhub because of its innovate services and impact on rural communities. To read the full project summary, visit https://www.ruralhealthinfo.org/project-examples.
RHIhub is a national online information center on rural health issues, funded by the Federal Office of Rural Health Policy. Their website includes over 12,000 resources specific to rural health. Rural Health Models & Innovations features hundreds of successful programs that are serving rural residents across the nation.
This video was created by the Crohn’s and Colitis Young Adult Network in honor of World IBD Day (May 19th). The Crohn’s and Colitis Young Adult Network (CCYAN) is an international platform for young adults with inflammatory bowel diseases. You can learn more about this organization on their website here.
By Sneha Dave
My brain swirled as I waited on the surgery table for my colectomy, the removal of the entire large intestine. I told the anesthesiologist I was ready for him to start the sedation, knowing this is an irreversible surgery, but also knowing I would come out with a new life. I was 13. I thought to myself that for the first time in years, I could go back to school full-time. I could go on a walk in my neighborhood—I would be “normal.” What I didn’t expect was the numerous challenges in reentering society.
I was diagnosed with ulcerative colitis at age six. Ulcerative colitis is a chronic inflammatory bowel disease that is said to affect primarily the large intestine, but in truth, it affects the entire body—the joints, the mouth, other organs. In young adults, it can create emotional, professional, and social barriers. There is limited research about this, but it is not a debated fact among young patients with ulcerative colitis and other invisible chronic diseases.
Realizing the barriers that young adults with chronic illness face, I created the Health Advocacy Summit, (HAS) an advocacy event for young adults with chronic diseases. With Summits in nearly four states, this organization has become more than a support system or a fundraising organization—it is a direct tool for empowerment. HAS is not only connecting young adults with similar conditions to each other but also hosts sessions that address different aspects and needs of a chronic disease.
There is a definite need for more resources to support the community of younger patients who face chronic illness. Further, there needs to be a fundamental change in the way young adult patients are treated by the medical model. When I was diagnosed, my care was rudimentary. I would only see my pediatric gastroenterologist and the occasional specialist for other related symptoms. There was no holistic care, no addressing the psychosocial aspects of chronic disease, especially at a developmental adolescent phase.
Some medical facilities do have a psychologist integrated within the specialties, such as gastroenterology, which is of incredible value in early intervention therapy. I am hopeful that other hospital systems will become focused on treating the patient as a whole, by including specialists such as psychologists within their practice.
Nearly 15 years after my diagnosis, I live with a J-pouch, which is my small intestine functioning as my large intestine. I’m not yet what one would classify as healthy, and I’m still seeking effective treatment while hoping for more research. But I feel incredible! I know that there is a wide community of other young adults with invisible illnesses, and given an empowered voice and more recognition, this community can transform the healthcare system to be even more patient-centered—and more effective in not treating the patient as a number, but as a person.
Sneha Dave talks about growing up with a chronic disease, the isolation she has experienced as a result of her illness, and what she is doing to create a brighter future for others living with chronic conditions.
By Sneha Dave
Regret: the fine line between an emotional breakdown and the feeling of hopelessness. Those of you with or even without a chronic illness know exactly what it feels like to regret.
I am a freshman at Indiana University and was diagnosed with ulcerative colitis, a chronic inflammatory bowel disease, when I was 6. Truthfully, I have missed out on a normal life, but I have been equally fortunate with so many opportunities to travel and expand advocacy efforts for individuals suffering from inflammatory bowel diseases and other chronic conditions.
When I find myself regretting my medical decisions, I end up in an indestructible bubble of negative thoughts. Regret that surrounds a chronic illness can truly be the one emotional strain on top of insurmountable physical obstacles. We often regret our medical decisions; for example, whether we should have agreed to that irreversible surgery or not. I thought hard about my surgery, but it's been difficult – even now – and here's why.
I was a freshman in high school when my family and I decided it was finally time for the last resort we had: to have my entire large intestine removed (a colectomy surgery). It was an incredibly difficult decision, because the large intestine is irreplaceable. While many medical doctors have classified the colectomy surgery as a cure, I can testify that it is absolutely not. I live with inflammation and still undergo procedures, frequent doses of antibiotic treatment and an incredible amount of fatigue. Not having a colon affects my daily tasks, and as a first-year college student, it can be frustrating even as I consistently put a positive spin on each situation.
Here's what to recognize when dealing with regret, especially relating to your chronic illness:
1. You just cannot control some circumstances.
The decisions I made on my own often loomed over me as I regretted not trying hard enough. One instance, in particular, was when I had a suppressed appetite due to active inflammation and medications. I was put on a peripherally inserted central catheter, or PICC line, for nutrition, and I often blamed myself for not trying hard enough to eat. While I knew it wasn't my fault, every time I went in public with my PICC line, I would regret my "decision" to not eat. It was emotionally stressful for me when I had to explain my PICC line. I often felt that what was happening to me was because I did not try hard enough or hadn't kept ahead of my medical responsibilities.
2. Don't stand in the sticky sand of despair.
During my nearly 13 years of living with ulcerative colitis, I've been prescribed lots of medications – many that cause symptoms almost worse than the disease itself. There was a 6-month period where I refused to take my lowered dose of six large capsules a day (down from an original eight capsules) because I felt so good and normal without them. That period where I did not take medications could have led to what came ahead: a life with severe inflammation. It used to really bother me that I didn't take my medicine for that long. Without being self-deprecating, I quickly learned that it was unnecessary for me to think about one topic instead of focusing on the positive and trying to fix my situation at hand.
3. Rest, and don't regret it.
Still to this day, every time I miss a class in college, I feel incredibly awful. Earlier this year, I was paralyzed with pain in my abdomen. I had to skip class and was upset because I didn't know how to explain it to my professor or if he or she would be understanding. Not to mention: How do I explain to the person sitting next to me, who I will seek help from for notes, that I was sick when I clearly was not visibly sick? As a chronic illness advocate, I sincerely believe in educating people about your chronic illness, but it is difficult to do so for the smallest reasons such as asking for notes. The same way I felt bad about missing a class, many chronic illness sufferers feel guilty about missing an event and stress about how to tell someone they were sick. Never feel guilty about resting, because it is likely what you need most.
4. Let yourself relax and experience joy.
My mom, dad and I took a trip to hike this summer. While I was climbing up a very steep hill that my father pushed me to climb, I realized how far I had come. It was incredible. I, the same person who a couple years ago had difficulty putting one foot in front of the other without feeling dizzy, could climb a difficult hill and feel great while doing so. It is absolutely necessary for you to get away from your comfort zone and experience nature or whatever may relax you. Abandoning yourself in something that you really love and enjoy can be more healing than anything else. Living with a chronic illness is not easy, and you certainly deserve it.
I can't recall what it felt like to not have ulcerative colitis and its consequences, and I'm OK with that. In the most positive context, I'm OK with having missed class field trips and birthday parties. I'm OK with the physical pain that I have faced and will face. But most of all, I should feel OK with the medical decisions I have made, and not let regret steal joy – or let it do the same to yours.
BY MEGAN STANDISH
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!
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.
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.
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.
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.
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).