This post is for people who don’t have Crohn’s Disease.
Specifically, it’s for the people who wake up every day feeling sick but are still without any medical diagnosis.
I have been where you are. I remember what that felt like. I lived with Crohn’s for ten years before my family and I had a diagnosis. There’s no greater disappointment than searching and searching for the source of your pain only to have doctors look you in the eye and tell you that you’re fine. And there’s no greater pain than not knowing. If that is what you’re going through right now, I am so sorry. I truly am.
I bet you don’t hear that enough: I’m sorry. That’s something that tends to come after the diagnosis, when you have a Scary Reason to tell people when they ask why you’re missing school. But right now you don’t have any validation. Even so, your pain is real. What you’re going through is real. And I’m sorry that you’re suffering.
I remember being ten years old, sitting on the floor of my fourth grade classroom and digging my fingers into my ribcage. Another pain had set in- one that I didn’t yet have words for. Back then there wasn’t any real reason to try to explain what I was feeling, because there wasn’t anyone to talk to about it. I couldn’t just turn to one of my peers and say “Hey, you know that pain that you get after lunch? The one under your ribs that feels like something is grinding up your insides? Well, mine’s coming! What a bummer. Can I borrow your crayon?”
Instead I would shove my fingers under my lowest rib and pull it outward, as if I was trying to take the bone right out of my body. This relieved some of the pressure and made the pain bearable enough to ignore. I did this for months before my teacher finally noticed and sent me to the nurse. When asked what was wrong, I just said “My tummy hurts.” I didn’t know how to describe what was happening, or even that it was out of the ordinary. She would send me to lie down on the cot.
Most of my elementary school days were spent on that cot. I can still remember the exact way that it smelled, and the hours of stories I would make up in my head to entertain myself. I can remember the posters that hung on the wall. I read them over and over. Sometimes another kid would come into the room and a curtain would be drawn between us, but we could still whisper. I would stay there until the pain passed or my boredom became unbearable, whichever came first. Then I would get a note from the nurse and return to class.
You probably feel guilty. I know I did. Let me guess, you’re missing school? Or staying home from work, or telling your friends to go ahead without you? And when they ask for a reason you don’t have one to give. So you go to the doctor, probably several different doctors, to ask for them for the reason, and all you get are negative tests. Congratulations, you’re fine. Here’s your doctors note, you can be back in class by Monday. But you’re scared, because when Monday rolls around you don’t know how you’ll feel.
They are going to tell you that you’re making it up. They will. Maybe they won’t come right out and say it, but they will send you to therapists’ offices and you will sit in cold rooms and fill out long personality tests. Teachers will ask if things are alright at home. You’ll still be in physical pain while this is all happening, and it might make you angry. You might feel like no one is listening. They’ll write about it in notebooks and teach you different methods of relaxation. Sometimes you’re going to feel like you’re shouting into a vacuum. But while you’re stuck waiting, you have to remember that everyone means well. They are only trying to help. They just don’t know how any better than you do.
My whole life I only ever had one doctor tell me “I believe you.” Without any physical evidence he decided to treat the ten year old girl sitting on his examination table. He practiced holistic medicine, so everything was natural and not covered by insurance. He would crack my neck, made me drink globs of fish oil straight from the bottle, and ask me about whatever play I was in at school. We had a deal: no soda, no fried foods, no dairy, no gluten, nothing processed, and he would never give up until they found the source of my pain. I saw him every Friday evening. Every couple of years I would get frustrated by the lack of progress and the strict diet and my mom and I would invest our time in some other doctor who would inevitably put me on some pill that wouldn’t work. After a few weeks we’d throw out the good food and go crawling back to that little office.
I remember being the only child in the waiting room. I remember a procedure that I hated as a kid, where the nurse would give me a hollow pill that was filled with string. She’s tape the end of the string to my chin and I’d swallow the pill and, gagging, be asked to lie on my side for seven minutes. The nurse would then take the end of the string from my chin and pull it right back out of my stomach through my open mouth. I’d cry every time.
I remember the night my doctor told me that I would have to cut wheat products out of my diet. This restriction came later than the others, and I had some teenage angst built up by that point. Pretzels were my favorite food and I was livid, fuming the entire way home. As my mom pulled into the driveway I finished up a rant against my doctor with a particularly empathic swear word. My mother slammed on the brakes and the car screeched to a halt halfway up the driveway. “What did you say?” she demanded. I didn’t dare eat another pretzel or use that word again for years.
There’s something that I wish I could go back in time and tell myself. Even more than that, I want to tell all of you who are in a position that feels anything like what I have been describing: This is the worst that it will ever get. I promise.
I know that’s a ridiculously huge thing to promise, but I can’t express how firmly I believe it. I’ve had multiple surgeries and emergency trips to the hospital in the year and a half since I was diagnosed with Crohn’s. I have experienced the worst physical pain of my life (shout-out to my rectal/anal abscesses of 2014) and still, nothing compares to the agony and anxiety of not knowing what is happening to your own body.
People will treat you like you’re crazy. They will call you a faker, a whiner, a baby. You will spend a lot of time wondering if that is true.
Listen to me: You’re not crazy. You’re not crazy. You are suffering. You are the strongest person in the world for facing the unknown every day. You are scared, and you are in pain, but you are not crazy.
I remember the worst of it. It was the summer before my last year of high school. My parents were out of town and my brother and his friends were sitting in the other room. I felt a wave of nausea roll over me. It passed and then came again, only stronger. My arms went numb, my forehead burned, there was a roaring in my ears. After I vomited the first time I thought the pain would be over, but it continued late into the night and on into the next morning. Each time I thought I had outlasted it I would feel the first tingles in my arms and my head and know that I would spend the next few hours building up to a horrible vomiting episode. It would always last for days.
This happened six times in those three months. It was just as much a mental game- I would try to map out specific times of day that it happened, or maybe a certain food that was triggering the episodes. No matter how we tried to figure it out there just didn’t seem to be any logic to it. I was always terrified. I didn’t want to leave my house for fear that an episode would start. I never ate anything without assessing how it would feel on my throat coming back up (spaghetti is the worst, mashed potatoes are the best.) I would wake up in the middle of the night to that tingling feeling and burst into sobs, knowing that I wouldn’t be going back to sleep for the next two days.
I tried hard to be positive and appreciate the good days, but every time I started to believe it was over the tingling would start again and I would know that I was still trapped. The good days became just a tease of hope, something to be ripped away from me at any moment. Doctors threw around words like bulimia and recommended more therapy. I remember thinking “I can’t live a life like this.”
And then one day, without reason, it just stopped.
Apparently that can happen with Crohn’s Disease. But it would be three more years before I knew that. If I had known that there was an end, that it would only last for three months of my life, I could’ve been braver. I could’ve made it easier on my parents and my brother and my best friend. I wouldn’t have lost my mind over it, but at the time I thought it was forever.
This specific type of pain that you’re in, it’s not forever. I wish I could tell you that whatever is hurting you will stop right now. Or that you’ll at least understand what’s causing it. I wish I could promise that once you figure that out it will never come back. The truth is, I don’t know. But I do know that it’s not forever. Your circumstances are going to change. That’s just the nature of life. This thing that you’re going through right now, it’s temporary. You can handle it, okay? It’s just temporary.
People love to tell me they are sorry that I have Crohn’s Disease. But I’m not. I’m one of the lucky ones because I have answers. These people who are living without a name for what is happening to them, they are the ones who deserve our respect and prayers and attention. They have all of the pain without any of the perks of disability. Instead of telling them to be strong, we tell them that they are doing this to themselves, or that their pain isn’t real.
Your diagnosis is coming. It might take ten years, but it’s coming. And I’m so sorry that you don’t have the comfort of understanding what’s doing this to you. I want so badly to be able to help you, but I don’t know how.
But listen to me: I believe you.
If you need some reassurance that someone knows your pain is real, please email me at firstname.lastname@example.org and we can talk about it. You’re going to be just fine.