Posted by ImproveCareNow™ on April 23, 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!
Thanks for sharing your perspective, Jen!
What part of the world are you from and how is your life currently being affected by the coronavirus pandemic?
Jen: I was diagnosed with Crohn's disease in my mid-twenties (I'm sure I had it much longer, but that's when I was actually diagnosed) – I’m 48 now. I live in Vermont and am an ImproveCareNow staff member. Through ICN, I am lucky enough to have access to so much information about IBD. I love reading PAC stories about dealing with their disease. I don't know many adults with IBD, but I'm sure they're out there - we just don't talk about it - unfortunately.
The first two weeks of social distancing I wasn't sleeping through the night - every silly worry that could pop up, popped up from 1-3am. Not necessarily because I was worried about getting the virus, but more about all the unknowns. This still keeps me up many nights!
What resources have you relied on to learn more and stay informed?
I scour the SECURE-IBD Registry information when Mike Kappelman sends it out weekly (Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE)-IBD is a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry where IBD clinicians worldwide are encouraged to report ALL cases of COVID-19 in their IBD patients, regardless of severity.) I am finding it very comforting that there are so few cases of COVID-19 being reported among patients with IBD!
What tactics do you use to cope with concerns/fears about coronavirus/COVID-19?
I had an infusion recently at the hospital - I was equally nervous about going out to a hospital AND super excited to see other people besides my son and husband. How horrible is that?! Every day I make lists of things I want to do (besides my ICN work, of course) - finish my book, plant potatoes, cut back my raspberry bushes, watch a new movie with my son, etc. As I check things off the list, I end up with a feeling of accomplishment at the end of the day. I also make it a priority to walk or do something physical each day, and I have found it helps my body settle down and be ready to sleep!
What is your greatest fear when it comes to COVID-19?
That my parents or my son will get it.
What is something you’re celebrating or feel grateful for right now?
I'm grateful that both my husband and I have a paycheck - that we have food in the house and are not lacking anything. I'm also (just a little) enjoying this time of not rushing around every day and night to sports events, meetings, social things, etc.
What would you say to someone who is feeling scared or alone right now?
You’re not alone! For better or worse, we’re all in this together … albeit separately! To me, it’s oddly comforting to know that everyone, EVERYone is in the same position as me. Home… waiting. There’s no FOMO in this situation, that’s for sure.
--
* 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.
-
If you have questions about your health or care and COVID-19 please contact your care team directly
-
If you would like to share your experience during the COVID-19 pandemic, we would welcome that, and you can do so here
-
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
Stay in the LOOP - sign up for updates and never miss a post!
Connect with ImproveCareNow - Join our CIRCLE!