For anyone new to this hashtag, welcome! It's May 19th, which is the annual #WorldIBDDay! Like most days marked to honor those living with a disease, this day is primarily about raising awareness. The amazing thing about social media and the IBD community is that this day feels like that and so much more -- it's also an amazing day to elevate the IBD community of patients, advocates, and healthcare advocates; and to celebrate the advances in IBD management and treatments.
Raising Awareness of IBD and the Experience of Living with the Disease
When I was first diagnosed, I had never heard of Crohn's disease (and like many, I had to break the habit of spelling it as "Chron's!"). It was years before I met another person with IBD at a small support group meeting in town. Many of those individuals were talking about the fact that they couldn't share their diagnosis because no one would understand and many found the symptoms of the illness be embarrassing to share.
While we still have further to go, I look at the efforts to raise awareness and the encouragement to be supportive and understanding of the symptoms that go along with the disease, and I'm so grateful. Because of awareness campaigns, more and more people are learning about the disease than ever before. It's so important that we continue to support IBD patients to share their stories loud and proud to continue to build awareness
Elevating the IBD Community of Patients and IBD Healthcare Advocates
The IBD community is an amazing place to be -- it's a group of caring, supportive, and resilient individuals who all bring a unique voice and personality to advocating for, and advancing the treatment of, Ulcerative Colitis and Crohn's disease. I genuinely believe that these patients have been direct catalysts in the shift and development of IBD care. These voices should be elevated and celebrated -- many of us lift each other up and cheer each other on.
I'm so thankful for the people in my IBD family. Today I celebrate us!
Healthcare professionals, acting as advocates of improving the IBD space, have helped to elevate patient voices, too. Clinicians, dietitians, mental health advocates, and many other supportive roles have begun partnering with IBD patients directly and helping to give a larger platform for their voices to be heard. In fact, I've recently joined Trellus Health as a Patient Advocacy Advisor, a type of ole that didn't exist years ago. Read more about that here.
On World IBD Day, I salute those partners, too. This type of partnership is necessary for the future of healthcare to be a place where patients with IBD truly thrive.
Finding Hope in the Progress of Disease Management and Personalized Treatment
When I was diagnosed 13 years ago, there wasn't a World IBD Day, we weren't talking commonly about using biologics to induce deep remission, treat to target initiatives, or partnering with patients to establish personalized and goals-based care. While we have a ways to go, and a cure is often the true north of our advocacy efforts, we have made it quite a ways in how we treat and manage IBD, and I feel thankful every year for how far we've come. Taking a pause and celebrating this is sometimes necessary, especially when treatment can feel overwhelming and scary some days.
And I'll keep pushing relentlessly for even better care by next year...
And it's ANYTHING YOU WANT IT TO BE!
As personalized medicine develops further, I think that World IBD Day should be anything that the IBD patient wants it to be. For some, it's a quiet and private celebration, and for those I celebrate publicly on your behalf. Others use this day as an opportunity to connect more with the community, to build on a support network that can be vital for building each other up when we need it most -- I find that some of my friends with chronic conditions are the most important people in my life.
I've seen this day as celebratory most years. This year, I saw it as a reminder to continue pushing myself towards the best health possible, which means that I need to keep setting goals and working towards them... it's a never-ending process, living a life successfully with a chronic illness - a message that many of us advocates use this day to share.
Happy World IBD Day to you, me, and us!!!