It’s been a while Crohnies. Just as I’ve been flaky on this blog, I’ve apparently been a flaky friend. Today I’m going to address Crohnies as “flakes”… Since that’s what many of our friends might label us for our behaviours when talking behind our backs.
If you have Crohn’s you will know what it’s like to have to cancel plans frequently. In fact, because we know we might be unavailable for said occasions, we are often non-committal in our scheduling.
I work a hectic, demanding, energy-draining career… (Well, being a Gypsy is a hell of a job ya know!) Juggling work, house chores, pets, a fiancé with a 7-day-a-week restaurant business and friends can be daunting.
Most people my age are healthy as lions. Some party almost every night of the week and get by… Others manage to keep all their ducks in a row while still maintaining a job, fitness regimen and social schedule, seemingly effortlessly. Must be nice.
What I ask for from people is understanding. While they might not be able to put themselves in my shoes (because they have never really been sick in their whole lives!) it would be nice for an ounce of respect when it comes to my low points with this disease. Yes I cancel out on plans. Yes I am often late. Sometimes I can barely stand up for fatigue and pain. Sometimes I haven’t eaten any solid food in 2 days and I am weak. What I don’t need on top of this is criticism and a guilt trip.
This has actually gotten to me to the point of doing some online reading. Boy are there some hateful quotes about flaky people. I even questioned myself: “Do I have a major character flaw? Am I really a ‘flake?'” But when I started re-reading blogs by fellow Crohnies, I felt the sense of camaraderie. WE ARE NOT FLAKES, WE ARE SICK.
Then I felt angry. How dare people misjudge me. How dare they give me that look when I tell them I’m feeling unwell, like, “Oh you’re sick AGAIN?!” Wouldn’t it be nice to live in a body that wasn’t painful, to eat and not worry about obstructions or vomiting and diarrhea for days after your meal? Wouldn’t it be nice to have a normal energy level and be able to maintain a healthy full social schedule? The truth is, they don’t understand.
When I finally have energy after a few good days, you know what? I have to prioritize. What NEEDS tending to today before I have to work again tomorrow? (Work isn’t exactly negotiable!) Well paying bills and taking care of family take precedence over casual time with a friend. Not to say friends are unimportant. Girlfriends are vital! Unfortunately it boils down to our limitations with this disease.
This post has been my first major venting session. Perhaps because there isn’t anyone I can talk to about this who really understands. (Well, my mother does. She’s my rock.)
What I aim to get through to you is this: don’t beat yourself up as I have. Don’t feel guilty or a lesser person because you can’t always follow through. Even if none of your friends understand you, I do.
Below I will post some quotes that I found therapeutic. I hope you will too.
I sign off here, dearest fellow mangled-intestines. May your bowels be with you even longer than your so-called friends!
~ CROHN’S GYPSY
