“Living with Crohn’s disease is not easy, but it can shape you -- as it has shaped me -- into a person who is fearless in the face of adversity and treats every healthy moment as an opportunity to chase and achieve your dreams. As I progressed through school, I slowly learned that with each flare-up ... Crohn’s disease did not define me. Rather, it was a major force in determining some of my biggest successes. This mentality has grown over the years, and I would not be as strong as I am today if it were not for my diagnosis of Crohn’s disease over 10 years ago. My advice to those newly diagnosed with this or any other chronic autoimmune disease would be to not let this condition define your weakness, but rather to use it as an igniting force in making your hopes and dreams a reality.”
“I had been a dancer, a gymnast, never an invalid. The shock of my new lifestyle overwhelmed me, but as time went on, I learned how to balance what my heart wants with what my body needs. My days of intense physical activity are over, but my days of intense intellectual activity are just beginning. I found a home in the music room, in the theater, and in the classroom. I can no longer flip, but I can sing. My leaps are smaller, but my stage presence is bigger. My twirls may be slower, but my knowledge of the world is growing at a faster rate than ever before. My disease, ulcerative colitis, taught me how to be in control.”
“The best advice I can offer to any student with inflammatory diseases pursuing higher education is to ask for what you need. These simple words seem obvious, but are truly an art to master. On my brightest, healthiest days, I say to myself 'you are doing fine; there is no need for help.' On my darkest, sickest days, I find myself saying 'do not burden others.' But the truth is that vocalizing your needs to those around you is the only way to realize your full potential. ”
“At age 10, I was diagnosed with juvenile idiopathic arthritis (JIA). I assumed my life would be boring and uneventful. However, being a fun-loving, exuberant, happy girl, I kept living and loving life. Whatever difficulties came along with having this diagnosis, I was determined to continue to enjoy my life. Thus, having JIA helped me become unwavering in my outlook on life. I reinforced within myself that, regardless of one’s health issues, there are so many opportunities in life to be had. I am blessed with a positive outlook on life. Having JIA has challenged me to further believe I can do anything I put my mind to. My diagnosis has given me more motivation, empowerment, and the determination to forge ahead, follow my dreams, and continue to attain my goals.”
“As a person with psoriasis, I’ve discovered there is a valuable lesson we can all learn from the life of a lobster. A lobster is surrounded by a hard shell which protects its inner parts. In order for a lobster to grow to its fullest potential, it must break out of its shell several times throughout its lifetime. I once lived life content to be in a shell. In 2011, I found the courage to break out of that shell to share my story. I was finally free from shame and insecurity and able to live my life to the fullest. Like the lobster, if we don’t grow, we die; not a physical death but one that will kill our destiny. ”
“My advice to other students living with psoriasis is based on my own experience … accept your imperfections and don't let them define you. This was hard for me at first. I overcame my self-pity, when I realized it is one’s inner beauty that really matters ... cherish true friends. Those who can look past your red, scaly skin and support you as a person. My true friends are still my best friends today.”
“Inside every lemon is a jar of lemonade waiting to be made. Instead of being soured by having hidradenitis suppurativa (HS), I am determined to be seen for my inner beauty and the content of my character, rather than the condition of my skin.”
“I learned about myself during my journey of living with psoriasis. I learned to share my disease with others to improve their lives. In high school, through living with my disease, I learned to take care of my health by eating healthy, getting rest, staying active and seeing my dermatologist, for my disease, regularly. I stay involved with sports and do yoga often. As I tackle a new journey pursuing a degree, I will continue to use what I have learned about living with my disease.”
“My journey taught me to use my voice to provoke change. As I went through severe flare-ups with my disease, I felt alone in my battle. I found that a multitude of teens struggling from IBD felt the same way, and this inspired me to create a nonprofit organization. Through this organization, teenagers with IBD publish newsletters for an international audience of over 9,000 viewers. While ulcerative colitis put a barrier on my youth, it has now become my greatest drive to live life with a purpose. ”
“Uveitis would not limit my ambition or my success. If I approached it with the right attitude, it would be manageable, not burdensome. You don’t truly know what you are capable of until you encounter a challenge that pushes you into unknown territory. With the right mindset, uveitis can simply be an opportunity to prove to yourself that you are stronger and more resourceful than you ever thought possible.”
“Following my diagnosis of psoriatic arthritis, I was faced with a unique situation that caused me to alter my priorities and make changes for my health and well-being ... I had to reconsider the physically demanding activities that consumed my schedule. Through personal sacrifice, I later found my true passion of service that altered my views of self-worth through the empowerment of abilities. While psoriatic arthritis has limited my physical abilities, volunteering has taught me that I have other areas of strength.”
“Diagnosed with Crohn’s disease at age five, I’ve grown to understand the potential and permanence of my diagnosis. I became more comfortable sharing my condition with friends and began to meet others who were recently diagnosed and feeling overwhelmed. My experience and outlook became a source of comfort and information for others and an opportunity for leadership. I know there are many challenges to living with Crohn’s disease, from physical to academic, but I’m confident that I have the motivation and foundation to navigate my future. So now, as 'one of the youngest patients,' I can confidently say that my challenge has in many ways turned into my victory.”
“Since receiving my diagnosis of Crohn's disease at age 13, I have made an effort to uncover the positives in difficult situations and make others smile when they think they cannot--whether that be through cooking dinners at the Ronald McDonald House or running "Senior Proms" at my local senior living center. Rather than letting my diagnosis hold me back, I have allowed it to push me forward: it has inspired me to become a leader in an international community service organization.”
“As a young person, a student, and a patient it is common to feel unequal in the relationships which define your life. But I want other students with inflammatory diseases to know that they are powerful and can seek the knowledge or skills needed to balance these relationships. Inflammatory diseases might slow your pace in school, but they can also inspire you to be proactive in your care and your coursework. Challenge your disease in the same way it challenges you. Defy it through careful management and planning, but most of all, defy it through an active and fully lived life.”
“Whether it was preventing me from riding my bike or embarrassing me with the sudden appearance of blood on my clothes, hidradenitis suppurativa (HS) has been impacting my life since the tender age of six. The disease has taught me many things, which are best summed up in one word: grit. Merriam-Webster defines grit as 'firmness of mind or spirit; unyielding courage in the face of hardship or danger.'”
“One of the most important pieces of advice I can give to anyone living with hidradenitis suppurativa (HS) is to remember that it is not your fault … no one should let their body stop them, no one should have to suffer in silence, and no one should put themselves down to such a degree that they cannot realize their full potential ... I want them to love and embrace themselves, for a while there are going to be countless obstacles that they are going to face, their skin must not be one of those obstacles.”
“My journey with Crohn's disease has taught me how to take a situation that, on the surface, appears to offer no positive outcome and make the best of it. Despite the challenges, Crohn’s disease has opened many doors for me -- researching, mentoring, and everything in between -- and has helped me turn a physical limitation into an opportunity to do limitless good.”
“Hidradenitis suppurativa (HS) is a difficult disease to live with, but difficulties create strengths. Maintaining HS breakouts and a busy life has benefited me when it comes to challenges. HS is a painful disease with ups and downs that often hit randomly. With two college tutoring jobs, classes and additional projects for honors requirements, I rarely let a bad breakout keep me down anymore. Through experiencing HS, I have made empathetic connections with struggling students as a tutor, learned how to manage pain and be productive, and taken steps toward obtaining my dreams through careful time management and celebrating accomplishments.”
“I was diagnosed with juvenile arthritis at the age of two, the greatest and worst thing to ever happen to me. Although living with arthritis has been difficult, it has provided me with opportunities to become stronger, grow as a person, and take action against disease. Juvenile arthritis has strengthened my focus ... although arthritis has presented challenges in my life, I have been able to grow as a person and it has positively shaped who I am today.”
“I am a medical student with psoriatic arthritis; while challenging, my diagnosis provides me with a unique framework to approach patients. I, like many of my patients, know what it is like to live with chronic illness and understand the challenges inherent to living with a chronic disease. I am thankful my experience with arthritis colors my patient encounters because it makes me a better student, one who builds strong relationships with patients to provide the best care possible.”
“Living with psoriatic disease has taught me strength and perseverance, even during weakest moments of my life. When I was in middle school, children were afraid of me; they thought I was contagious. My peers left the lunchroom table when I sat down. Psoriasis covered over 50 percent of my body. Embarrassed, I covered up to hide my condition. I developed painful psoriatic arthritis and had to quit soccer, causing further isolation and depression. Eventually, I realized that I could withdraw from society or face my fears through awareness and advocacy.”
“What is most important, is even though it may seem hard, stay confident with yourself and your body. Whenever I met new people through school or elsewhere I would always worry what they would think of what appeared to be a rash on my skin. However, time and time again it is never an issue. People ask because they’re curious and I have no problem answering any questions. However, don’t skip out on an opportunity because of fear of what others will think. Take chances and focus on what you’re doing and aim towards reaching all of your goals. Accomplishing what you set out to do shows that even with the constant distraction of psoriasis ... it does not have the ability to take away your confidence or your life.”
“Crohn's disease has taught me that life is unpredictable, thus I have to take full advantage of every opportunity and never take my health for granted. I cannot control the fact that I have Crohn’s disease, just as another cannot control his/her challenges. The only way to handle such hardships is take them as a blessing and learn from them in order to grow as an individual and be the best person and contributor to society that I can be.”
“Problems are about perspective. Life is not about the issues we face, but it is rather about how we respond to them. I have juvenile idiopathic arthritis (JIA). My JIA does not define me, but it does define my optimism. It defines the way that I view problems because when faced with issues, my first response is no longer anger or frustration - now, my first response is asking what can be done to help.”
“I was initially intimidated and overwhelmed by my new ceaseless cycle of homeschooling, practices ... Finding a balance living an ordinary life and medical life seemed almost insurmountable. Because of my Crohn’s disease diagnosis, I have achieved things that I would have never dreamed possible. I have grown as a person, becoming more sociable and well-rounded. I have flown on an airplane for the first time, snorkeled with barracudas, gone cliff jumping, and most notably beat cancer.”
“In June 2014, I was diagnosed with severe Crohn’s disease, along with many other debilitating health problems. Among various stays in the hospital, I understood what it is like to be in a hospital bed. One of the main reasons why I applied to become a volunteer at my local hospital was because I have had the type of experience that many nurses do not know of, being the patient and being vulnerable. I had the chance to turn my disease into something propitious ... Volunteering for over 350 hours helping others who are struggling is my passion, giving all credit to my inflammatory diseases for the opportunities.”
“I am a runner. I am not rheumatoid arthritis. Since my diagnosis at age 15, I’ve become stronger and tougher, because I've had to be. I know what it feels like to be at my best, because too often I’ve been at my worst. I have been broken down, but I've come back to reach an all-time high. I will never be my rheumatoid arthritis.”
“Living with hidradenitis suppurativa has pushed me to be extremely optimistic. I began to show signs of the disease in high school, and spent a year hating myself for it, and for a while decided to stop making art. It took a long time for me to push myself out of that ... I have learned that almost nothing comes without pain while having this disease, but the key is to find it within yourself to fight it. Finding something that eases it, finding that creating artwork both helps me mentally and physically, was immensely important to my health and well-being while living with this disease.”
“The unknown world of psoriasis was certainly not on my list of places to visit. Psoriasis not only affected my skin, but also impacted the psychological aspects of life. Despite my frustrations, I refused to feel sorry for my plight ... I joined an advocacy organization, where I found a resilient community, united in fighting the same battle. Interacting with patients going through the same challenges helped me regain my confidence and changed my outlook on my diagnosis. This inspired me ... to take an active role in raising awareness of the disease, fundraising for research, and reach out to other young adults going through similar experiences in their diagnosis. This process of turning a daunting challenge into a transformative opportunity taught me the value of perseverance in overcoming obstacles.”
“I was diagnosed with severe plaque psoriasis in 2010 ... I taught myself some things that I would like to share with other youth going through the same struggles of living with an inflammatory disease: you are so much more than your disease. Yes, many struggles come with living with this disease. People look at you differently, you have to consider many things about your future health ... or it’s simply too much to deal with the physical and emotional pain. You are your hobbies and talents. You are the love and support of your friends and family. You are your goals and aspirations. You are your feelings and emotions. You are your tears, smiles and laughter. Your are the fights, battles, and wars that you have won. You are your perseverance, determination, and strength. You are so much more than some disease. That doesn’t define who you are. You are a human being. Through all the strife that mankind has experienced since time began, human beings soldier on. So, through all the troubles that your disease may bring to you, none of that should hinder your future. Soldier on.”
“I was nine when I met my first friend also diagnosed with Crohn’s disease. We met at an overnight camp for youth with inflammatory bowel disease (IBD). Since then, I’ve gained dozens of friends with IBD … here is what I have learned: we have all been worried about test results, or missing school or work ... we have all been supported by our medical team ... we have also been comforted by knowing we are not alone. Having IBD for just over two decades has taught me empathy, resilience, and has empowered me as both a patient and a future clinician.”
“Failure was my weakness, yet also my strength, shaping and defining my character. So I crawled out from under the anvil, brushed myself off, and continued on undeterred, just like the tenacious coyote ... A diagnosis of Crohn’s disease did not make me a failure. After several surgeries and successful musicals, I conducted my first meeting as Student Council President with resilient strength, absolute determination, and a colostomy bag.”
“While I was in high school ... I was diagnosed with ulcerative colitis. Although I was very anxious about my new life as the victim of a chronic disease, the compassion emanating from the medical professionals I met along the journey put me at ease and made a mark on my formative mind. My diagnosis turned me from a teenager with potential but no ambition into a college student with a dream, motivated by past challenges.”
“When you are faced with a challenge, you and only you have the power to decide how to handle that challenge. You can allow it to control your life or face the challenge head-on; creating the life you wish to live. I chose, and continue to choose, the latter option. Being diagnosed with a chronic illness at the age of 16 was a difficult realization to process, but it inspired me to focus the energy, strength, and power I do have on what is truly important along every step of my life. Optimism is the key to my survival and happiness. I know that my story and my attitude will allow me to help others turn their struggles into a gift. There is true power in a positive attitude, optimism, and a smile.”
“Despite the emotional and physical impacts of psoriasis, I have learned from experience the importance of gratitude, since one can never be depressed and grateful in the same moment. Given such a perspective ... I firmly believe that medical care should not be a privilege, but instead a fundamental right to all. Therefore, I feel obligated to contribute awareness for the many that still live in such conditions ... improving conditions in my community and in far-reaching corners of the world.”
“At very young ages, we are taught not to judge books’ pages by their covers; however, as society molds us, our human nature overcomes our lessons and we judge each other as quickly as we judge a book. Though my psoriasis has been an obstacle, my diagnosis is no longer one that holds me back, but rather acts as a motivator to empower me forward and to not let an opportunity pass. Although I cannot hide my skin, I can do everything in my ability to prove to society through my achievements in college and beyond that my cover will not define my pages.”
“Polyarticular juvenile idiopathic arthritis. It was my decision what to make of those words. I decided to make a difference. I connected with local nonprofits, spoke at seminars, led walk teams, photographed awareness events, lobbied Congress, and became a support group facilitator. My JIA connected me with dozens of kids my age living through similar struggles; I could empathize and help them. From my JIA I have forged a path. I hope to empower others by teaching them to cope through the power of words, finding their voice and the strength within themselves. For those like me, every day is a fight for mind over matter; what really matters isn’t living, it’s living despite illness.”
“I have been living with ankylosing spondylitis (AS) for eight years, and looking at me, you would not think I have a crippling disease that makes it challenging to get out of bed. In fact, I am a three-time varsity hockey player, a varsity football state champion, a full time student, and a normal everyday teenager. Unfortunately, everyone living with AS is not as fortunate. Just because someone has arthritis doesn’t mean they have to sit on the sidelines, they can participate in the life’s adventures as I did.”
“Today I'm a stronger person. If I wouldn't have endured such a challenge, I wouldn't know how to deal with the challenges that life presents me today. I had to mature more quickly and there have been days when I don't realize that I limp. I've become used to things that I think are normal, but aren't, and they've made me resilient. They make me someone who isn't scared of a challenge and simply looks forward.”
“I was 14 when I was given my life-altering diagnosis of psoriatic arthritis (PSA). I realized from the beginning I could dwell on the fact that I now had a lifelong, debilitating, chronic illness, or use it to benefit others. I chose to benefit others. It challenged me to overcome my trials and tribulations, and gave me the tenacity to face the battle that was given to me head-on. While I have had to alter the way I approach activities in my daily life, I have refused to let my illness define me, or impede the achievement of my goals in any way.”
“Living with ulcerative colitis has transformed my outlook through strengthening my resolve and character. Unexpectedly, my condition has given me clarity about my future. Ultimately, ulcerative colitis has made me stronger and uniquely equipped to fulfill my dreams of serving and empowering others.”
“When initially diagnosed, I was scared rheumatoid arthritis would limit me and that if my friends knew they would think I was fragile. Fortunately, I quickly realized that that my only limitation was myself. I could still do anything I wanted to, I just had to approach it differently. This new outlook helped me to gain confidence and trust my body much more. Although my diagnosis was severe, I learned that I can overcome challenges.”
“Since being diagnosed with juvenile arthritis in 2013, I have had many wonderful volunteer opportunities. Advocating for arthritis gives me a feeling of freedom and hope. Instead of sitting around waiting for someone to find a cure for arthritis, regardless of how I'm feeling, I will gladly advocate for the resources and awareness that will lead us to a cure.”
“Coping with hidradenitis suppurativa (HS) can be the catalyst to pull from the depths of our innermost selves the drive and determination to triumph over the adversities that surround us. While life's challenges may hinder us on some occasions, they often afford the opportunity to grow in ways that we would not otherwise imagine. They teach us, towards ourselves and others, to focus on the best and not the worst. My experience with HS has instilled in me a confidence that I will carry throughout the rest of my life. As I continue to pursue a career in medicine, I will not let my HS define me; rather, through my actions, I will define my HS.”
“Throughout my journey with my ulcerative colitis, there has been one constant - the support of my nurse. While others minimized my potential to 'make it in life,' my nurse whispered to me, 'I know you can do it, this is just a bump in the road.' That bump in the road has shaped me into someone who never forget that small actions matter.”