Crohn's Disease and Communication Plans

In the age of technology, many of us find our patient communities and support centers online, via social media, apps used to track symptoms, or right here on inflammatoryboweldisease.net. The same is definitely true for me.

These friends are the best to have on my patient journey - they, unfortunately, understand on a very intimate basis the way Crohn’s disease affects my physical, mental and emotional health, and they almost always know what to say or how to cheer me on or cheer me up from afar.

Supporting a friend with IBD from afar

Recently, a very close IBD friend of mine underwent emergency surgery, followed by several days in the ICU. Geographically, he’s a plane ride away from me, so I couldn’t just drop in to check on him.

When my text messages went days without answers, I began to feel a gnawing in my stomach. Something was wrong, and he wasn’t in a position where he could tell me, or at least tell me he was in the hospital and getting the care he needed. All I could do was worry.

After a significant amount of internet sleuthing, I found that one of his local friends had visited him and posted a status update - he had been through surgery and struggled with complications, and was finally starting to get stronger again -  but he didn’t have his phone with him.

Understandable.

But honestly, really difficult for myself, and for his other IBD friends who maybe weren’t connected to his family or colleagues or local friends and couldn’t reach him or get an update.

A communication plan for when I am unwell and unable to update others

I’m an enneagram 2, and a people pleaser through and through. I worry about others, even when I shouldn’t. Even when I should be focusing on myself.

So when I think about my Crohn’s disease flaring, or experiencing an emergency that might leave me unable to communicate, I think having a communication plan in place is critical. I think it could reduce the anxiety and fear faced by my friends (near and far) and my non-immediate family, and that’s important to me.

My Crohn's communication plan for a flare or emergency

Here’s what I think should be included in the plan:

1. Who will be doing the communicating for me?
2. What do I want communicated - how much information, specifics, or just an overview? Prognosis? Estimated timeline? Or even just a brief “Here’s what happened, I’ll send more info when I can” type message? There are many choices and this is a space to opt for whatever feels right for you.
3. To whom would I like that information distributed? Family? Immediate friends? IBD friends? A small circle to start and then a larger circle if more time passes?
4. How do I want the information communicated? Text message? Email? Facebook status update? Do I need it to feel personal to the people receiving it, or is the mere act of having information shared
5. And at what point do I want that update to go out? Do I want it immediately? After 24 hours? 48 hours? A week?

As you think through these questions, it’s a great time to talk to your parent, spouse, child, friend, or caregiver about what this looks like for you. Please also note, this will work differently for every patient, depending on their desires, their friendships, and their local support/caregiver involvement.

Is this something you’ve thought about before? Please share it below!