When the Outside and Inside Don't Match: What to Say to Others on the Rough Days

When you have Crohn's/Ulcerative Colitis or another autoimmune disease, one of the most difficult elements aside from the physical trials and tribulations is the frequent lack of understanding by the general public, and even our nearest and dearest.  Even when you look ok on the outside, you can be feeling awful on the inside. Within my immediate family, almost all of us have some kind of gastrointestinal disorder, ranging from Crohn's to IBS, so growing up it was always a place where I felt like I could be myself - and most of all, be understood.

As a thirty-something, my greatest challenge as my world expands is in educating and engaging coworkers, friends, and even my spouse.  Sometimes it's hard, and sometimes you don't know what to say.  There's two facets of Crohn's: remission and non-remission.  I'm always working to better my coping mechanisms for each.

Non-remission or Active Disease:  

As I write about on My Crohn's Story page, one of the reasons I started this blog is because it can be very isolating in times of active disease.  Being confined to bed, close to a bathroom, day after day, while going through round after round of trying out different drugs makes it a daily struggle to keep calm and carry on.  I have found the only way to continue is to do what I need to heal, which is bring my world to almost a halt, find the right drug/diet, and then re-discover my way back to normalcy in baby steps.  This can take a good 6 months from flare onset to some semblance of normalcy, which is why having a flare every couple of years can make me feel like I'm always in limbo.

Remission:

While remission is a much-coveted stage when you have Crohn's, it can bring its own unique set of challenges.  For me, I've been struggling lately to determine how to handle those days when I feel a shift in my well-being that could indicate a flare may result if I don't make drastic changes in diet, sleep, or stress management.  These are the exact moments that are the most difficult to explain to friends and even my spouse.  It's when you need to have a weekend day to rest, or go to bed early, change meal plans, cancel social outings or prioritize a yoga session, especially when it seems to promote a "me first" attitude.  The trick is that those of us with Crohn's know that if you don't make yourself a priority and actively work towards better health, you're in trouble! 

So what to do? 

How to make yourself a priority without offending or coming across the wrong way?  I'm much more comfortable discussing my symptoms than most people are hearing about that, so sharing TMI for the sake of letting someone know you're not up for this event or that get together makes it tough.  For close friends, they know me well enough that I can say I'm not up to getting together, or switching our plans for a more restful evening in rather than going out.

For others (coworkers, social acquaintances, etc...) I've learned less is more, and given this day and age of harried schedules it can be just as easy to say, "I'm sorry, but I've had something come up" or "Yikes, I realized I double-booked myself!  Apologies!" and offer to make it up to the friend when you can. 

When it comes to the home front, I spent ten years of my life living alone before marrying, so it's been tough to learn how to communicate the right way.  I feel like more of a disappointment here because I can't hide away the bad times or days.  I duck out and to bed early, require eons more sleep than my husband ever possibly could, have crazy days where I can't eat our dinner options, and so on.  I suppose it all comes with time!

I welcome any advice, and wish the best to each and every one of you!

Crohnies unite!