Here’s All You Need To Know If Someone You Love Has Crohn’s Disease
What they want from you is the kind of support that is more precious than steroids, infusions, surgeries, or pills will ever be: they just want you to remind them that they're still normal, that they still have control, and that they're not alone in this.
By Kim Quindlen
You can study the medical side of it all you want. You can learn about all the different levels of intensity, the symptoms, the potential causes and the side effects. You can read up on the statistics and all the different diets and the treatments and the surgeries.
But they don’t care about that. The person you love doesn’t care if you understand the difference between active disease in the colon or active disease in the large intestine. They don’t care if you know exactly where they have inflammation and which medication does what for their body. They have these discussions enough with their doctors, nurses, pharmacists, pathologists, and hey, sometimes even therapists.
What they want from you is the kind of support that is more precious than steroids, infusions, surgeries, or pills will ever be: they just want you to remind them that they’re still normal, that they still have control, and that they’re not alone in this.
Crohn’s is a very isolating disease. For the most part, it’s an invisible illness, but it feels anything but. Sometimes there is rapid weight loss (or gain), swelling, scarring, colostomy bags or other results from surgeries, and general physical signs of exhaustion. But other than that, you could pass almost anyone on the street and have no idea what’s happening to them internally. And Crohn’s isn’t the type of disease that anyone is eager to talk about. No one wants to explain to coworkers or friends or relatives what exactly being “sick” or “having a bad Crohn’s day” entails. There’s a sense of shame, an embarrassment, an awkwardness. An aversion to talking about any of this, after always having to answer so many probing questions from medical professionals. So for the most part, we tend to keep all of this stuff to ourselves.
That’s where you come in.
You don’t need to cure their stomach pains, their digestion problems, their joint pain, their anxiety, whatever. You don’t even need to understand exactly what they’re going through (honestly, you never fully will). All you need to do is make them smile, make them laugh, make them feel like this is just something that they go through rather than something that they are. They don’t need any reassurance that “everything happens for a reason.” Sometimes they just need someone to hear them, someone to listen to them while they vent about all the frustrating parts of this, without trying to give advice or solve anything. They just need a connection, a warm hand, a comforting voice whispering reassuring things, like tomorrow will be better. No medical questions, no requests to rate your pain on a scale of 1 to 10. Just the familiar, heartening smile and look of someone they trust.
The moments in which you’re helping them won’t always be tender and sweet. Sometimes they’ll lash out, project their anger onto you, blow a fuse, temporarily lose their temper. You do not have to let this slide. In fact, calling them out on it, and refusing to let them get away with something just because they’re “sick” will only make them feel stronger and more normal in the long run. What they need to know, what they need to see, is that you love them, and you’re there for them, and you’ll support them in any way that you can. But they also need to see that you have faith in them, that you don’t pity them, that you don’t see them as fragile. That you’ll call them out the same way you’d call out any other regular person.
They already have a doctor, they already have a nurse, they know where to find just about any medical professional they need. What they need from you is to just be you, and to make them feel like them. Love them tenderly, hold their hand encouragingly, but look at them as if they’re the most invincible person in the world. It will work more wonders than you know.