Awareness Days are Every Day for Me

Here we are, in the middle of summer now, and another World IBD Day has come and gone.

I know many IBD patients who jump at the chance of IBD Awareness Month, World IBD Day, and other awareness days. But honestly, I’m exhausted. I live IBD day in and day out. Having one day or a single month to try and explain my disease and justify my symptoms to others is honestly the last thing I want to do sometimes. Maybe it’s because I am a full-time IBD advocate, making myself available to others 24/7, but 1 day just doesn’t do it for me.

This year, I was sad

This year was a reminder of all the things it’s taken from me. And sometimes, part of acceptance just means being sad. And this year, I was sad. My quality of life in the past 12 months has been less than stellar. I’ve been at the hospital more than I’ve been home and the last thing I want to do is talk about all that I’ve gained from having IBD when, at the moment, all I feel is that it’s robbed me of so many things.

This year, I decided to take a mental health day on World IBD Day, because selfishly, I really didn’t feel like hearing about everyone’s success stories, and how hard they fight for their healthcare and a good care team, when all I wanted to do was curl up in a ball and cry.

I just wanted space

In past years, I’ve taken time to introduce the world to other IBD advocates on my blog and what amazing things they have done in the IBD community, despite losing so much to IBD. This year, I just wanted space. Because like the title, every single day is an awareness day for me. And quite honestly, it’s exhausting.

Please don’t get me wrong. I appreciate all the work that goes into Awareness Days and celebrating all of the good science that has come from decades of research and development. But I also think there is a perception that public IBD advocates are expected to either do something educational, or be a part of something even bigger by teaming up with the community. And that requires a lot of effort from patients, who may be really busy, have a family, or are currently sick, and would rather put effort into getting better rather than overextending themselves and oversharing.

Awareness Days are very different for each person/patient

But if you are not one who feels comfortable oversharing or feels guilty not participating, I’m here to tell you it’s okay. Why? Because you likely inform and educate others what it’s really like to live with this disease 364 other days of the year and we really, really appreciate that.