Crohn’s and Colitis are isolating conditions. Because they are invisible illnesses, it’s impossible for a patient to walk down the street and identify another. As a result, we patients are disconnected from each other by default. To be connected to other patients, it takes conscious effort.
Friendships in real life are created by people being put into situations that allow them ample time to get to know others socially — for example, you meet someone at work, at school, or at a party.
Patients with Crohn’s & Colitis don’t have a natural setting for this sort of socialization. As a result, becoming close friends with other patients has to be a result of a created situation. It requires looking for others online or it requires setting up getting coffee with that cousin of your parent’s friend’s friend who you were told through the grapevine has Colitis. The truth is most patients don’t do it. It’s too much work, the odds that you will really connect with that person are too low, and the benefit is too amorphous.
What I’m saying is that Remicade, an intravenous medication for IBD, changes all of this. It takes disconnected and isolated patients and builds connection and empowerment among them. How could a medication for Crohn’s & Colitis do this?
Remicade is the only popularly prescribed IBD drug of which I know that is administered in groups. Remicade is administered by infusion–in other words, by a slow intraveneous drip. Every eight weeks, patients who take Remicade visit their doctor’s office or an infusion center to receive this treatment, which usually takes about four hours. Oftentimes while this happens, they sit in a circle with other IBD patients. These Remicade “”pow wows”” are sometimes the longest time that patients have ever sat in front of each other.
Sitting in front of another patient that has been spending their life going through the same private condition as you is extremely empowering. You get to swap war stories. You get to tell each other about the crazy treatments you’ve tried; the crazy symptoms or drug reactions you’ve experienced; the crazy social situations you’ve encountered. What you start to get is validation. You get validation that all of the crazy things that you’ve been going through aren’t crazy at all. You learn that you are not alone.
This validation is empowering. It translates into confidence. It translates into unity and comradery with other patients. You go from feeling like an isolated victim to feeling like a cause-driven commanche fighting alongside a band of warriors. Your spirits rise with this newfound sense of community. And you begin to realize that the most valuable resource available to you in your care is sitting in the chairs around you: your fellow patients.
Let the patient revolution begin.