Do you know someone with Crohn's? Chances are that you probably do and if you don't, it's most likely because they haven't shared it with you yet. Given that 1.6 million people in America (Crohn's & Colitis Foundation in America) and over 3 million are affected by it in Europe according to World IBD Day calculated for early 2015 it's something you would expect almost everyone is aware of. However, many go undiagnosed solely because the symptoms are so varied and do not have a recognisable pattern to them.
As someone who got diagnosed with a severe form of Crohn's Disease which has left me with just one tiny bit of intestine rather than two as most people do. I almost didn't get diagnosed, it took over a year as I was left to nurse my flare up before I could be officially diagnosed and provided with adequate care. Why? Because Crohn's Disease is seen as one that does not usually affect those with Asian origin and I seem to have hit a jackpot as an Indian!
So what is Crohn's Disease? In brief, it's inflammation in the gut that causes a myriad of symptoms and this is where it gets interesting/complicated...
The inflammation is caused by an autoimmune malfunction which surfaces in different ways depending on how worse your condition is. Yes, people with Crohn's undergo surgeries, yes Crohnies can't eat 'regular food' and yes, we have horrible stomach pains that can go on for days if not weeks but those are all the things that any doctor will be able to advise upon.
If you do know someone with Crohn's here are the things that doctors' won't tell you about, not that those wearing white coats are evil but simply because they have very little understanding of the gravity of living with Crohn's everyday.
Here are a few things which are the bane of every Crohnie's existence!
"Take a nap, you'll feel better"
The number of times someone has told me to rest up so that I can feel better is crazy. I understand it's often said with the nicest of intentions though it is the least helpful thing to say to someone with a chronic condition. The hint is in the word 'chronic' that implies it isn't something that can be treated like any other diagnosis.
One of the biggest difference between chronic conditions and other horrific diseases is that at some point you can hope to be cured or even if you're extremely fatigued, you know you'll feel better after taking a nap but I can sleep for as long as I want I know that when I wake up I'll have to go through the same routine of nursing myself out of the bed, which usually takes me about 2 hours every morning.
Eating out: not the pleasure it used to be
I am a foodie, I mean I LOVE food beyond anyone's wildest imaginations. I probably spend more on food than anything else and I mean it seriously! You would think eating out is like a dream for a foodie such as myself however, I've given up trying to explain to restaurant staff on the various dietary changes they need to do for me.
If you have Crohn's or other IBD related issues you're probably vigorously nodding your head in agreement -- all of us express it in our own ways, some can't have certain types of fibrous food, others become intolerant to lactose and other such dairy products etc. Since I don't have much of my stomach left to experiment with, I have to be extra careful so when a group of friends decide to go to a restaurant and drop me a text I'm sorry, I simply cannot make it.
A) I'm not sure I have enough energy (read above) and
B) Even if I had the energy considering how few restaurants can accommodate my diet I'll probably need you to change the entire plan.
Let them be lazy!
One of the most critical aspects of living with a chronic condition is social stigma. You might think 'what social stigma?' and the answer simply being, the inability for larger social sphere to understand our daily lives invariably excluding us from many aspects of our community.
We're often accused of being being lazy, even if the people I work with don't view me that way purely based on our everyday conversations and the fact I always have time to successfully deliver on projects I still get comments on the way I choose to spend my time -- the choice to not work a regular job where I could possibly make a lot more money to staying indoors for weeks at end when I'm working away on my Mac but unable to physically get about.
Somehow, no one questions the man who spends his evenings drinking beer in front of the TV or the woman with kids who is always tired because there is something external one can point fingers at to understand the situation. Because I'm by myself in my apartment with no kids, I'm supposed to feel incompetent if I'm unable to cook or clean and stay on top of things.
This doesn't make me a slob neither does it make me lazy regardless of the countless number of people who fail to grasp the complexity of a lifestyle which isn't one that's familiar to them.
Well, this isn't a rant and I apologise if it comes off as one, but it needed to be said for millions of us, not just with Crohn's, but a number of chronic, incurable conditions who are made to feel terrible about their lives unnecessarily. I'm incredibly grateful for the life I have and lead, and hate, to think there are other Crohnie's out there who aren't allowed to discover their potential simply because the rest of the world isn't able to see it.
Do you have Crohn's or any other chronic condition? I would love to hear from you and learn about some of the challenges you face everyday & work on overcoming them together - tweet me @bhaesa!
Bhavani Esapathi is a Writer & Speaker on social tech & innovation and the Founder of Chronically Driven; a platform committed to bringing invisible disability to the forefront of mainstream media. She also manages The Chronically Driven Letters bringing inspiring content into your inbox every Sunday.