Holy shit it’s already Thursday! Remember when I told you that December was going to be a relaxed and calm month for me? Well, that was a grand misjudgment. But enough of that! Some really serious issues are out there and to remember this from time to time is a healthy thing to do! Let’s put things into perspective out loud!
Hello there my name is Juli and I suffer from IBD. I am not going into detail here. If you’re interested you can read all about it here and here. First thing here is to understand that talking about IBD IS NOT being juicy or inappropriate!
It’s Crohn’s and Colitis Awareness Week and today I am leaping to the chance to tell you healthy people out there how difficult it is to have in illness that you can’t see. When someone has a broken leg you open the door for him, offer him your seat in the train and wait for him patiently when he’s hobbling a few steps behind you.
When you suffer from IBD you need all that too. Patience, a seat in the train, someone who gives you a hand even at the tiniest of occasions. Yeah, putting on shoes or showering can be a challenging thing to do! Yet you ALWAYS have to ask for help and patience. And asking is humiliating and costs energy that you just don’t have.
Next thing is the weight. I don’t know why but in my case people seem to be okay with commenting on my weight all the time. When you have a flare you lose weight. No matter how much food you put in your mouth – which you don’t because you regret literally every single bite – you just keep losing. You feel like dying and people compliment you and ask how you’re doing it. Then your gastroenterologist with whom you have the closest relationship next to your family members – I even have mine on speed dial – puts you on corticosteroids. Prednisone has the nasty side effect of causing outrageous hunger and also makes you put on fat and water. You’ll look like a balloon within days. And people will notice and let you know – believe me!
When you have a flare your social life stops abruptly. You just can’t risk going somewhere. Being caught in the train or a traffic jam is the worst fear of every IBD patient. I have humiliated myself publicly several times. It made me stronger but it’s a slap in the face every single time. Luckily you just don’t have the energy to think too much about it.
And then there is the pain. The pain changes you. Sometimes you get angry, sometimes you get nasty and most surely you don’t treat the people around you very fair. And yet you can’t change anything because you feel like you’re burning from the inside alive.
It’s a nasty thing and nobody can do something about it. Many people don’t speak about their condition because they feel so humiliated by it. It’s not easy to admit that it happens that you don’t make it to the bathroom in time. If you know someone with an IBD just keep that in mind.
But I am not one to whine about a condition I can’t change. I am a stoic person with the strong feeling of knowing that I can not only survive all pain but also have a life that’s not ruled by my shitty immune system.