When I was interviewed for the IBD Round Table, I made the comparison between having Crohn’s Disease and living as a ghost. It didn’t dawn on me just how accurate that description was until I began to think more about it.
My experience with Crohn’s Disease (before my ostomy) has been extremely negative, not only because of the physical and mental suffering it’s caused, but how it affected my family life. For my family, my being sick was like being dead – and I’m not trying to sound dramatic either. For most of my disease, I couldn’t take part in birthdays, weddings, funerals, trips to the park, the mall, the backyard, let alone be present for dinners or playtime.
I was a ghost. For my kids, the idea of “daddy” was there, but daddy wasn’t – not to cuddle or laugh with, not to watch movies or go strawberry picking with. I wasn’t living in a house, I was merely trapped in one, and my haunting meant that I’d see less of my family and more of the inside of an empty room. I wasn’t around for them, and it hurts to recall all the lost YEARS I spent being too ill to be a good father or husband.
Being a parent is tough, let alone being one with a chronic illness, so if you have kids (of any age), please let them know that not being able to do the things they love doing with you is not their fault. I didn’t do this enough, and I regret missing those opportunities to let my kids know that our circumstance was not their fault.
If you are living as a ghost, or find yourself becoming one, let those around you know that you’re struggling. Isolation is not required when we are hurting, nor is it an ideal way to battle this terrible disease, so their mere understanding can go a long way.