Posted by ImproveCareNow™ on April 08, 2020
We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!
Thank you so much to PAC (Patient Advisory Council) member, Becky who shared her perspective on life with IBD in the time of coronavirus and the disease it causes – called COVID 19.
What part of the world are you from and how is your life currently being affected by the novel coronavirus (COVID-19)?
Becky: I'm from northern VA, around 30 minutes outside DC. Since I'm a senior in high school, this pandemic has really disrupted my lifestyle. The rest of my year, graduation, prom, and other senior traditions have been cancelled. This has even affected my upcoming college experience by delaying orientation and potentially even move-in dates. The biggest impact I've felt, beyond the obvious school situation, is the mental health effect. Everyone is isolated right now, and of course that's very hard to deal with. This situation reminds me a lot of how isolated and down I felt during my first hospitalizations and brings back a lot of unhappy memories. I was also hoping to reverse my ileostomy this summer - before I start college. Now that cannot happen, which is really upsetting as I've been looking forward to having that procedure done for a while.
What resources have you relied on to learn more and stay informed?
I've been using a ton of resources. I use news sources like CNN, MSNBC, etc. as well as updates from CDC and NIH. I've also looked a lot at what CCF has to say about Covid-19 and IBD, which has helped me understand the risks for myself. The PAC has also been a great source to hear information, as well as people's strategies for coping and staying safe during these times.
What tactics do you use to cope with concerns/fears about COVID-19?
My family has been very good with social distancing, which makes me feel better about the situation. I've been staying in contact with friends--using Zoom calls daily--to help combat the feelings of isolation. I've actually been trying to stay off social media right now, because people keep posting sad messages or throwbacks to when it wasn't quarantine, and that upsets me. The best methods of coping I have been using is listening to a ton of music and podcasts, getting really busy with things I'm interested in (I just joined Greenpeace!), and exercising! I went on a horrific bike ride yesterday that made me feel like I was dying, but it was great to get out of the house and really move. Taking daily walks is the best!
What is your greatest fear when it comes to COVID-19?
My greatest fear is that someone I love will get sick. I know I'm at high-risk, but I'm really just worried that the vulnerable people in my family or PAC will get sick because others aren't social distancing.
What is something you’re celebrating or feel grateful for right now?
Right now, I am so grateful for Zoom and online platforms that are keeping us all together virtually. I've been messing around on Zoom to stay connected to friends in the PAC, at my synagogue, and at my school. I'm also so grateful to my teachers and most importantly to all of the support systems out there right now. I also cannot express how grateful I am to all the nurses, EMT's, doctors, police, firefighters, and other people who are being so brave on the front lines.
What would you say to someone who is feeling scared or alone right now?
There is always support you can turn to. Right now, coping is really about finding your best fit. Get involved in something you're passionate about, stay connected to the people you love, and do what YOU need to feel the best you can. Whether that's podcasts, sleeping, or taking up LEGOS (I'm guilty!) -- do it. If you're looking to talk to an IBD patient, the PAC is always here to chat with patients and families. Just remember that this will eventually get better. Stay safe and reach out when you need it!
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* ImproveCareNow is not in the business of sharing medical advice, but we are in the business of connecting people and sharing seamlessly. Information shared in this LOOP is the perspective of the author - it does not constitute medical advice and is not an official recommendation of ImproveCareNow.
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If you have questions about your health or care and COVID-19 please contact your care team directly
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If you would like to share your experience during the COVID-19 pandemic, we would welcome that, and you can do so here
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For a listing of COVID-19 resources, that have been approved by the ImproveCareNow Clinical Committee, please see Information about the novel coronavirus (COVID -19) for IBD patients and families
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Connect with Becky and the PAC at improvecarenow.org/patients