Posted by Jasmyn Jansen on July 21, 2022
I was diagnosed with Crohn's disease at six years old, a year after I started experiencing symptoms. I have now been managing this chronic illness for 16 years! In addition to being diagnosed young, I was living in the Netherlands at the time -- while I wasn't born here, all of my family is from here and Dutch was my first language.
During my early years living in the United States, when I was young, developing, and insecure, I struggled with how IBD as an invisible, chronic illness defined me. I had been afraid of losing the people I love because of how they would perceive me if I told them about this disease I would have for the rest of my life.
Yet, with time and maturity, has come more acceptance and self compassion. Crohn's disease has ultimately, and endlessly, reminded me to nurture and love the body I have been given and led me to my passion for healthcare. This past year has been truly a testament to this -- starting to work out, hike more and many more miles, and continuing to pursue my Bachelor's in Nursing. Amidst this, the people I love most I haven't lost, I have only grown closer to and am more grateful for. It wasn't without adjusting my mindset that I now see Crohn's as a constituent of my identity, one that I have defined for myself and my future as a healthcare professional.
Fascinated by the ImproveCareNow PAC team and research, their dedication to patient advocacy, and an ever-growing, loving community of IBD warriors fueled my interest to apply to this committee and contribute my perspective and my ideas to their pertinent and relevant work for the IBD community. To have this space for IBD warriors to develop content for those with IBD and educate the public is exactly what we need to change narratives and perceptions of people with IBD; this would empower more of us with IBD to learn to love our bodies and we choose how this disease defines our lives. I hope that through my work, either toolkits or blog posts, with PAC we can continue to change these narratives and perceptions, as well as educate.
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Join Jasmyn and the PAC - patients with IBD (14+) can learn more & connect at improvecarenow.org/patients
Put in your time and energy on behalf of someone else. No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:
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Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint
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Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea
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Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
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Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
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Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa
