Imagine your abdomen is a blender. Now, someone shoves 10,000 little knives into that blender. Crohn’s disease is pressing the on button.
I have been living with Crohn’s disease now for about ten years, and this analogy is the best I have conjured when describing my pain to those that have never felt it. To my closest friends, I feel very comfortable discussing my health and my symptoms. When I’m having a bad IBD day, they know about it. Whether it’s from the expressions on my face, my absence from the group, or strictly from me telling them, they know. Describing my disease to others that don’t know more, or/and have never heard of Crohn’s disease is another story.
It’s more than just a stomach ache, or it’s more than an overall “not feeling well.” When I talk about being tired, I’m talking about my entire body aching with every step I take. I’m talking about how even the thought of getting out of bed brings me to exhaustion because I don’t want to exert energy. Fatigue is only one part of it. When I talk about pain, I’m talking about truly stabbing pain, like a pitch fork plunged into your body and every time you move, the pitchfork twists a little deeper and a little wider into your gut. I’m talking about a boulder the size of a microwave being pressed into your intestines, with each step you take another rock being added on top. I don’t even want to get into the toll my mental health takes because of my disease; I’ll leave that for another discussion.
I’ve had many years of experience in processing and handling the pain associated with my disease. I’ve also had many years of explaining to people the reason why I am in pain and exactly how I am affected by my Crohn’s disease. Sometimes I enjoy talking about my disease; I see it as a way to communicate and educate others on the disease so maybe next time they meet someone with it, they can have more sympathy towards them and a better understanding. Other times, I find it a chore. Going on and on, again and again, explaining the same story I’ve been telling others for the past ten years. I always start with the same script:
I have Crohn’s disease. Have you ever heard of it/do you know what it is?
It’s an inflammatory bowel disease. Do you know what that means?
Basically, my intestines attack themselves and I need medicine to feel better, otherwise bad things can happen to my digestive tract.
Depending on how interested the person is, I go into more or less detail, explaining more than just “attacking my intestines.” The average person does not have a gastroenterology medical background, so I keep it light and leave out the details of my bowel movements. When I decide to go off script, it’s usually from two different reasons. It’s either because I am not feeling well and I need to express my pain someone (hence, where all of the previous analogies I’ve given come into play), or when someone is just not getting it.
Generally, people are pretty understanding when I explain my illness, but sometimes you get those wackos that feel the need to put their opinion about your illness down your throat. People have tried giving me new diet tips or foods to eat to “cure” my disease. Suggestions of “just workout more, try yoga” as if yoga is the magical cure to any problem I have. People have expressed how fortunate I should be that “at least it’s not cancer” or a different illness. One thing never to say to someone with a chronic illness is, “Well, at least you don’t have [insert any other disease].” It doesn’t make us feel better, it honestly makes us feel worse because it invalidates our own pain and suffering from the very illness we have to live with for the rest of our lives. I would never wish my disease onto another person, but when it comes to times like this, I sometimes wish they could just experience for a day what it’s like during a flare. Then they’ll see if yoga is really the best thing for me.
I’m not trying to bring the mood down and paint a bad picture of what living with Crohn’s disease is like. For me, it’s not always pain and suffering. There are things I’m happy about and things in my life that wouldn’t exist without it. Bonds I’ve created with other people with IBD, self assurance and confidence in myself to overcome obstacles and challenges I face everyday, and awareness of my health are just some of these examples. My disease has shaped me into the person I am today, and although it sometimes feels like knives poking out of my gut, on the days it doesn’t, I’m happy that my IBD has given me a platform and a place in a community with compassionate people going through the same things I am.