Whoa… Should I really be talking about IBD?

StopTalkingAt 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?

soapboxTruth 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.

Editor’s Note: Cheryl Hentz is a monthly contributor to our blog. You can find Cheryl on Facebook at Mother of a Crohnie, on her blog at Mother of a Crohnie, and also on Google+

Tags: , , , , , , , , ,

  • Susan Soroka

    While I do not have a family member with IBD or Crohn’s, I do have a dear friend of 30 years who has lived with Crohn’s. We find it helpful to talk about…not in detail…but knowing how his life has been impacted by Crohn’s… I appreciate your sensitivity in knowing not all do want to discuss their IBD (or perhaps any other disease), and I also appreciate your vocal advocacy for IBD. In some ways, like depression… a silent killer that many do not want to share due to societal taboos. I believe, the more we can talk about a disease, more awareness is generated and hopefully more dollars go to research. Thanks for your posting.

    • Susan… I couldn’t agree with you more! It’s why the mission of The Crohn’s Colitis Effect is to make Inflammatory Bowel Disease ( IBD ) a household name. It isn’t until everyone has an minimal understanding of the disease will they be willing to give up their hard earned dollars to fund research for a cure.

      Thank you for reading and supporting what we do here!

  • For me I feel it is important we discuss IBD, for each of those not wanting to discuss IBD there will be those feeling alone & isolated because of IBD. I feel in the long run it is incredibly important we discuss it for how many other beautiful souls do we have to loose to such a life changing illness. I can understand some peoples reluctance to discuss IBD but for me I feel it is far too important of a topic than to just sweep it under the rug. People will begin discussing their own journey with IBD in their own time & when they begin to feel comfortable, in the meantime I believe the many IBD advocates will continue fighting hard for the awareness we all deserve Xx

  • bree

    I find writing about it helps me best.