When your child gets diagnosed with a chronic disease like Inflammatory Bowel Disease, the world becomes very overwhelming in a flash. Prior to the diagnosis, the words “Crohn’s disease” or “Ulcerative Colitis” mean absolutely nothing to patients and their families. During my journey, I have asked parents and patients about their memories of the moment at which they were diagnosed and the comments are usually similar: I had no idea how the diagnosis would change our lives. I have a husband and two kids diagnosed with Crohn’s. I have to say that each diagnosis was overwhelming in its own way. You would think that by the third diagnosis, I could handle it but it wasn’t any less overwhelming than the first. I knew too much. I feared too much. I now worried about them having simultaneous flare-ups.
There will be ups and downs with the disease and there is no reason to ride the roller coaster alone. My IBD friends – both parents and patients – are my rock. They are the ones that give me perspective, provide me with questions to ask my IBD medical team, give me support, and speak and understand the same language. They are the ones that have walked in my shoes. They understand! My family and friends try to understand, try to give us support, but they can’t always feel what we feel. It is almost impossible to fully understand.
It is due to this understanding that IBD parents and patients share, that I urge you to find your IBD community online or where you live. A friend of mine refers to a group of us as her “IBD Village”. Find and create your Village! Ask around. My experience is that someone you know will know somebody else that has IBD. Online you can find reliable sources such as Smart Patients, ImproveCareNow, and many other non-profit IBD Foundations.
Giselle – a Smart Patient