Posted by Alex Jofriet on July 26, 2016
It’s a scene out of a typical relaxing Sunday afternoon: you’re sitting on the couch, watching your favorite TV program. There’s some occasional napping thrown in there, and it’s like you don’t have a care in the world. After the stress and busyness of school or work it makes for a restful and relaxing afternoon. To an outside observer, life during an IBD flare might look like exactly that.
IBD, which includes Crohn’s disease and ulcerative colitis, has been coined an “invisible illness”; an illness that leaves a person appearing “normal” on the outside, but inside the reality is that it’s all kinds of messed up. When you look normal it’s hard to get across to others what’s really going on. Sometimes it takes a hospitalization or a surgery for people to understand the seriousness of what you’re going through. Just look at the stories of people living with IBD who have family members or friends insisting that their pain is all in their head; that it’s simply mind over matter. As the saying goes, seeing is believing. For this very reason invisible illnesses can be very isolating for their sufferers. And the fact is we need support.
I spent the first five years of my diagnosis not telling anyone besides my immediate family about my IBD. I made that choice because I thought that was easier. It wasn’t until someone forced me to open up that I realized my initial belief couldn’t have been farther from the truth. Support helps you see there’s something worth fighting for and it gives you the strength to fight. And while I’ve known for some time how important support is, I didn’t realize until my latest flare that there were ways of finding & connecting with support that I hadn’t yet taken advantage of.
During my latest hospitalization, it was suggested that I live-tweet my experiences using the @ICNPatients Twitter account. When I first saw the suggestion it appealed to me on many levels, but I had no idea what kind of impact it would actually have. Looking back, I had always regretted not having many pictures of me in the hospital. Much of the time, when I was at my sickest, I wasn’t open about my disease and the lack of pictures reminds me of the regret I have for not opening up sooner. The physical and emotional state of someone during a hospital stay, when they are at their most vulnerable, is not usually a time when anyone feels like grabbing a camera and documenting the moment. We live in the age of the “highlight reel”, when some won’t take pictures of themselves without careful posing, massive amounts of makeup or photo filters. This probably has a lot to do with media suggesting that showing vulnerabilities isn’t a good thing; that instead you have to always look good and strong.
I think there’s no substitute for the real thing. How are we going to help others understand our reality, if we’re only willing to share the highlight reel?
So, I decided to take and share photos of myself during this flare. And I can definitively say, after posting hospital photos for a few days that showing your vulnerable side doesn’t mean you aren’t strong. It makes you that much stronger. It reminds me of some very wise words from Brene Brown, someone whose work I learned about via Ted Talks viewed in a class I had my first year of college. She notes that only when we are brave enough to explore the darkness will we discover the infinite power of our light. We are inclined not to share our vulnerabilities with others because we see risk in embracing weakness, but in order to see the “light” we have to be ready to take the hard path.
Of course, when I am flaring and facing uncertainty and limited options, I’m scared more than anything: I’m scared about my future; I’m doubting my path; I’m struggling to look at my family without breaking down sobbing. And now you’re thinking so why in the world would he think taking a picture of himself in that state would help his situation? The child in me wants to answer with BECAUSE I SAY SO… But no, the real answer I think lies in another quote from Brene Brown. In it she explains what it means to be authentic. Authenticity is a collection of choices that we have to make every day. It's about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen.
We all want to feel some sense of belonging in this world and without showing others the real you, that feeling will not be reciprocated. Whether it was the consistent likes or the retweets or just the overall connection I felt to the outside world, when I shared images of myself in the hospital via social media last week, I knew in my darkest moments that I belonged somewhere. And that there were a lot of people who saw my authentic self and wanted to support me.
I hope that you all can find a place where you belong and where you can find support. Whether that be within the IBD community, within a sports team you’re on, or among your family. But above all I hope you all can overcome the vulnerability and find a way to express your authentic self, especially when it feels like the hardest time to do it.