Thread by @LivingWithUmeed

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita Although I had the support of some friends & family, the taboo & lack of knowledge about #IBD meant not many knew how to support me. I found it difficult to educate loved ones & am thankful for more resources that are available now. #MondayNightIBD #SouthAsianIBD (1/ )

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita At the same time, I've also met people who couldn't understand how someone my age (17-23) could have such a #disability. The invisibility of #IBD added to this. As a result, my struggles with #IBD were downplayed, minimized & ignored. #MondayNightIBD #SouthAsianIBD (2/ )

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita Given the stigma around #digestive dx & #disability in #SouthAsian community, I felt like I had to make my condition as invisible as possible. These internalized social norms meant I also downplayed my UC to make others more comfortable. #MondayNightIBD #SouthAsianIBD (3/)

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita The stigma also made it hard to opt for #ostomy. Family/social circles viewed ostomy as a last resort & not a viable treatment option. The ostomy also makes my dx more visible, impacts body image & I often feel the need to hide my bag. #MondayNightIBD #SouthAsianIBD (4/ )

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita Also, due to insurance limiting the care providers I could choose in 🇺🇸, I felt that it proved difficult to find an #ostomy nurse or GI dietitian who took my cultural background into consideration.
#MondayNightIBD #SouthAsianIBD (5/ )

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita With my #ostomy for example, peristomal redness or soreness has often gone unnoticed on my brown skin tone. This has resulted in me having to go back & forth constantly repeating myself to get the care I need, which has been frustrating.
#MondayNightIBD #SouthAsianIBD (6/ )

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita Another hurdle I've faced is having to take on the translator role when including my parents in my care. No translators available spoke the Fijian dialect of Hindi my family speaks, leaving me to make my parents understand a taboo dx.
#MondayNightIBD #SouthAsianIBD (7/

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @vkckiranpullela @TheMaveilousGut @dunung_ruchita These experiences have made me nervous about attending appts. There is a constant worry whether or not HCPs will be culturally competent & help my care, rather than dismiss my concerns. This can be very draining when feeling unwell.
#MondayNightIBD #SouthAsianIBD (8/ )