“Last year, I began working as a fashion stylist for Wear on Wheels, a fashion truck that creates pop-up stores throughout LA. I became a fashion stylist, something I never thought I could do with an ostomy. I was even more surprised when the founder of the company asked me to become her creative director, as the company was invited to star in its own reality [television] show, and she needed guidance with the content of the show. I see this [as] an opportunity to raise awareness about fashion for women and men with disabilities to inspire people to have a better outlook on the challenges they face throughout their health journey.”
“As I pursue my graduate degree, I am constantly evaluating my capabilities. The long journey of a PhD, and all the adventure that comes with it, is within my reach but I will only be successful if I understand and respect my body. Crohn’s disease is a part of who I am and it has made me a more self-aware, adaptable, and determined person. My future is bright and I know that I am healthy and strong.”
“My illness shaped who I am today, and I am unapologetically proud of that. With this passion, I founded Combating Ableism Together (CAT): a student organization laying a foundation for a culture of inclusion and support for disabled students. I overcame the shame and stigma of talking about my disease and raised over $100,000 with the Crohn’s and Colitis Foundation Young Professionals group, where my story became a powerful fundraising tool.”
“Although I cannot control when my stomach has flare-ups, I can control what I do with the time that I am not in pain. Crohn’s disease does not limit what I can do, but it has enabled me to learn to handle challenges with the determination to excel. My climb is not complete, but by implementing the lessons learned through my journey with Crohn’s, the mountain peak is in sight.”
“I wasn’t going to let [Crohn’s] disease define me. I made it my goal to graduate with honors, and right now I am on track to graduate summa cum laude. Yet, none of [my fellow classmates] who will join me for this honor have had to wake up early to be to the lab by 7 am. None of them have been pricked and prodded by more doctors than they can count. But I will graduate next to them—and as I walk to accept my honors I will not be thinking of the needles and vomiting, but I will be thinking about the work I’ve done to achieve the honor. Crohn’s can be troublesome at times, but you can overcome it and be stronger and better than anyone else because it won’t define who you are.”
“Written as a letter to Crohn’s disease: To understand you better, I had to see how you hurt others, so I shadowed a colorectal surgeon and witnessed your true character. Knowing that you could make me just as weak if I let my guard down was haunting, but I learned how to persevere despite your hurdles. I took a job researching your nuances in a lab, where my interest in you grew exponentially. I learned your weaknesses, specific antibodies, and certain genes, and realized how captivating you really are.”
“Arthritis once seemed like an obstacle, but it has opened new doors and given me an opportunity to grow in ways that I never thought possible. I have become active in the arthritis community, becoming an Arthritis Foundation Ambassador, attending summer camp for children with arthritis and a national Juvenile Arthritis Conference, and participating in numerous Arthritis Foundation fundraising walks. I would encourage students to seek ways to be involved in their community and school, such as volunteering for a fundraising walk, and joining a club or sport. Get involved. Be your own advocate. Live your life to its fullest. Always remember: Your disease doesn’t define you, in fact you are stronger having learned how to live with it.”
“Stunned [by my rheumatoid arthritis diagnosis], I found refuge in service activities. My doctor introduced me to the Arthritis Foundation where I found my voice and discovered my inner strength. As an advocate, I met with both congressional and state lawmakers to discuss pending healthcare legislation and raised $21,557 to benefit several organizations.”
“My advice to those suffering from an inflammatory disease is that you must be willing to ask for help. HS [hidradenitis suppurativa] was preventing me from acquiring the tools I needed to succeed. After silently struggling for years, I decided it was time to speak up and get the help critical to my success. This self-advocacy presented me with a timeless lesson: know when and how to ask for help. ”
“Living with HS [hidradenitis suppurativa] has helped me realize that I am stronger than I ever could have imagined. Now that I know that, I am pursing my master’s degree in healthcare administration. Having HS helped me realize that this was an opportunity to educate other people within the healthcare field and my community about the disease. I want to make it a point to bring awareness to HS. I have felt so alone at times because I don’t know anyone that goes through what I go through within my community. I don’t want anyone else to feel that way. Knowing that there are other people in your corner makes living that much easier.”
“The first thing I would tell someone with HS [hidradenitis suppurativa] is that there’s nothing wrong with them even though it seems like the sky is falling. Yes, all of that is horrible, but having this disease doesn’t make one less of a person. We were all born with infinite value and a purpose. One shouldn’t let HS hold them back from becoming the person who they are meant to be.”
“Although my [ulcerative colitis] diagnosis weighed heavily on my mind, I channeled my energy into positive actions to raise awareness and help others in my community. I became involved with the Crohn’s and Colitis Foundation to help plan their Take Steps walk and educate others. Working with them allowed me to look at UC from a healthier perspective: I could embrace my disease without letting it define me. As I start a new chapter in physician assistant school this summer, I see my UC diagnosis and experience as a patient educator as strengths in my ability to better connect with my patients. I know I will be a more empathetic provider because I have gone through the process of being diagnosed and living with UC.”
“I learned to speak publicly about my experience to enhance community understanding, I advocated for others and myself to the university and professors and in turn I made my community more accepting.”
“My diagnosis has given me a renewed outlook on life and provided me with inspiration to push harder towards my goals. Navigating an invisible illness can be extremely difficult as most people do not think, believe or understand your illness. Having psoriatic arthritis and psoriasis has made me more resilient and determined to live my best life, spend time educating others and advocate for the best care for those of us who have autoimmune diseases. I turned my pain into passion and I use every opportunity to educate others and mentor others who suffer from autoimmune diseases. We exchange knowledge, recommend treatments, discuss relaxation techniques and encourage one another through our flares.”
“It is an inescapable truth that I live with a chronic illness, but how I choose to live with that adversity is what defines my strength, never my skin. I learned early on that you are only as good as the company you keep. This disease [psoriasis] has taught me how to form meaningful relationships with understanding and compassionate individuals. Psoriasis has given me a platform to educate others about chronic illness. It has served as a basis to allow me to encourage others to not pass judgment but rather make a conscious effort to seek out knowledge.”
“I got involved with the National Psoriasis Foundation in high school and have been lucky enough to be a regional youth ambassador for the past two years. I gave a speech at the annual NPF walk on the [National] Mall, I stood in front of hundreds of strangers and told them about my struggle with psoriasis. I never thought I would have the confidence to do that and it was extremely frightening, but also one of my proudest moments. I used to be so afraid of anyone seeing my skin and here I was standing in front of all these people telling them about it. People came up to me and told me that I inspired them—after that I stopped letting psoriasis hold me back.”