Today (May 19th, 2015) marks another World IBD Day. I know that some people see today as a special day for advocacy and as a reason to celebrate, but the past few weeks leading up to today have been full of anxiety, discouragement and upset for me.
If you’ve read last years post on World IBD Day 2014, you’ll know that I don’t really like “special days” like World IBD Day, Valentine’s Day, Mother’s/Father’s Day, Thanksgiving, etc. because I find that they not only devalue the importance of making each day count, but they also cause a lot of pain to those who can’t celebrate or take part.
Since last World IBD Day, I’ve set aside 30+ hours a week towards advocacy, content creation, and supporting others with IBD; thus far, this has been completely as volunteer work. Keep in mind that I have a full time job and 3 other family members to care for, so my advocacy means A LOT to me, or I’d never be able to commit myself to that much work on top of the constant battle with fatigue and ongoing IBD-related issues I’ve had.
So when a day like World IBD Day comes up, I wonder how much extra time I should be putting in so that others can see that I’m making enough of an effort to support the community. Yes, I feel judged, and part of me wonders if an extra 12 hours of work will really make an impact among the noise you’ll see on social media today – and there is a lot of noise when you have a large group of people focusing their efforts on a single day. Will my social media posts be seen? Will anyone outside of the IBD community learn something new? Will this very post even be read?
Right now, I have many friends, including other IBD advocates, who are sick or in hospital or too worried about leaving their home because of IBD. I fucking hate this disease and all the pain it’s caused me, my friends and their families. Does a World IBD Day (or week, or month) help them? I don’t think it does.
How many special days do we need to dedicate to IBD awareness before people stop confusing it with IBS? How many special days do we need to dedicate to IBD awareness before bathroom access is available to anyone who has such severe bowel urgency that they CAN’T hold it in any longer while out shopping?
IBD is every day for my friends and I, so every day will be World IBD Day; Every. Single. Day.
Please help to spread awareness wherever and when you can. Even if it means simply sharing a valuable article online or a patient’s story, each day can be an opportunity to fight back against this terrible illness. We will win this fight; It may not be on World IBD Day, but we WILL overcome this disease together.