At a recent support group meeting I listened to a few people talk about how their child or they themselves don’t want to talk about their IBD with anyone. They don’t want anyone to know. Hearing them relate their feelings and recalling others expressing their wishes to keep quiet about what they are going through, made me stop in my tracks and think. Apparently there are many people with IBD out there that just don’t want others to know about it.
For me this concept is novel. My instinct has always been to get involved in finding a cure, educating the public, and helping those with IBD and their caregivers deal with the craziness that has changed their lives forever. Realizing there are a number of people out there wishing to remain silent, I began to question myself. Am I helping or hurting these people? When I speak out like a crazy person advocating for IBD, am I making them feel uncomfortable? Or am I a welcome voice for those who wish to remain anonymous drawing attention away from them? I am not sure yet. These are new thoughts for me that I have yet to explore.
Another aspect to this (and I know many of you are thinking it) is why a person chooses not to talk about their IBD. Of the conversations I have had it could be because of depression or embarrassment. I’ve heard others say they just want to feel normal so choose not to call attention to their illness. Still others talk about not wanting to be a burden or worrying their family and friends. They all want to be strong all the time. If it is talked about, it could be viewed as weakness.
But where does that put me in all of this? I am just a caregiver after all. What do I know about any of it? Am I really helping people who have made a choice, for whatever reason, not to talk about it? Or do they wish that I would just shut up already?
Truth is, I’m not going to stop talking about IBD. People everywhere need to know that it is a real disease and is debilitating. However I feel that my perspective has changed because of these conversations. Each person with IBD is on their own journey. Each is in a different place and needs to deal with it their own way. I need to respect that of each person. And I pray that my soap boxing on their behalf helps them in some way.