When I asked Rosanne Mottola to come on About IBD and discuss her recent vaccination against COVID-19, I was excited that we could share her story with other people who live with inflammatory bowel disease (IBD). It has been a difficult year for everyone, but people who live with Crohn’s disease or ulcerative colitis have also weathered a significant amount of uncertainty in regards to their health.
I also asked her to come back to briefly update me after her second dose and I thought I’d add it on as a segment of a longer episode. My intention was to understand how she felt physically and emotionally after the second shot, which wouldn’t take long. But it turns out we had more business to discuss and instead, we created another full-length episode together.
It became clear to me that Rosanne’s experience through the process of agreeing to tell her ulcerative colitis story and in creating Episode 87 with me brought up some salient issues that I’ve probably been long remiss in addressing.
Listen to Rosanne’s UC Story and Her First COVID-19 Vaccination
IBD Comes With Stigma and Loss
IBD is a family disease and it affects everyone around us. Being lonely and feeling isolated is not uncommon in people who live with IBD.
IBD is also highly stigmatized. Some of us have had the experience of losing loved ones because of our disease. This is especially true when the disease is severe. What’s an even more common situation, however, is that the people around use become worn out with our illness. They get weary of us not being able to do all the things healthy people at the same age can do. At some point, friends and family start to leave us out of their plans. They might feel as though we’re constantly asking for help with everything from doctor’s appointments to errands. It unfortunately might seem as though we don’t have much to talk about beyond what’s going on with our health.
Listen to Rosanne’s Experiences With Telling Her Story
Telling Your Story is Powerful
For these reasons, having someone ask you about your IBD journey, and then being listened to and heard, is powerful. When this happens in private, such as at a support meeting or even a meet-up, there’s often a sense of relief and a feeling of lightness.
Sometimes, though, there’s also some introspection that takes place. We don’t always process what’s happening to us while it’s still going on. Other people offering a listening ear and giving you the feedback that “yeah, what happened to you was serious and affecting” is empowering but it also sometimes opens up new (or long covered) feelings.
Deciding to Go Public
When you share your story publicly, however, there are a number of other things that might happen. It’s worth considering what might occur when starting a blog, a social media account, a podcast, or a video channel about your IBD.
Some of these can be difficult. Certain people in your story might not like how they are portrayed and might get upset. Others might tell you that your recollection of events is not accurate. Still more people will think that you’re sharing things that are personal and are best kept private. And in some cases, people will tell you, and this is always inexplicable to me, that your experiences are not valid for one reason or another.
Revisiting Can Help But Sometimes Only After It Hurts
And lastly, there’s what happens when you find yourself reliving some of your experiences, especially if you never really had the opportunity to process them before. This is what I’ve experienced in writing my blog and what Rosanne related to me when we got together to produce a second About IBD episode.
You might have forgotten some of the specifics until you get into the weeds with your story. Memories can come back and be challenging to process. Some people may find that it takes time to tell their full story or that they need to hang on to certain parts of it until the emotions have been sorted through.
Acting With Intention
For all of these reasons, it’s important to be intentional and thoughtful about how, where, when, and why you share your IBD journey. Expect to uncover new emotions and difficulties while telling your story, whether that is in public or private.
We can’t control how others are going to react to our experiences. We can’t anticipate how those people who are part of our journey will feel about the retelling. All we can do is process our own emotions and deal with the difficulties that have come along with a diagnosis of IBD. Sharing has so many benefits for oneself, for the IBD community, and for the general public, who need to understand more about these diseases.
After taking the time to consider how it will affect you and others, I encourage you to tell your story in whatever way best serves you and helps you to heal from your experiences. You deserve to be heard and you deserve to be whole.