But you don’t look sick.

I’ve been battling this thing called Crohn’s Disease for 31 years now. I’d had stomach aches from a young age and one wise doctor diagnosed me as having a “nervous stomach.” Is that a real affliction?

The night before my 10th birthday I woke up in excruciating pain. I’ve always been one to try to handle things on my own, not bother or worry anyone else, so at first I tossed and turned trying to find a comfortable position. That didn’t work. Then I thought, maybe I had to go to the bathroom. I sat on the toilet, bent over in pain, and nothing was happening. Maybe I had to throw up? Nope, I couldn’t do that either. There was NO WAY I was going to be sick for my birthday – it was my 10th birthday after all, which seemed pretty special. I laid back down and tried to muffle my groans with my pillow. The intense waves of pain were becoming more unbearable. I was sweating. Finally, I called out for the first person that comes to a child’s mind: “MOM!!”

When this story has been revisited with my family, my parents always add that their feet both hit the floor at the same time. It must’ve been some yell. Not a siren’s call, but a desperate howl of pain. They came in and asked me what was wrong. I could barely speak. I looked up at them, pointed to my stomach and whispered, “tummy.”

Within minutes my dad carried me to the car. I remember laying in the backseat and wondering why my dad was running red lights. It must’ve been 3:00 a.m., so no one was out. It was empty and quiet in the car, with my parents not making a sound.

The rest of the situation is a blur. I found out later that I was in shock from the pain. The doctor in the ER believed it was appendicitis. Once I was unconscious, the surgeon discovered a blockage in part of my intestines. So, only after cutting me open was I able to be properly diagnosed. There is this really pathetic-looking picture of me in Intensive Care with a birthday cake held before me with 10 candles blazing. My family and the nurses sang to me and I think my sister blew out the candles for me. The nurses enjoyed the cake which was fair because they were very kind to me and held my hand when I was scared.

Crohn’s Disease is an autoimmune disease; no one understands why it occurs and there is no cure. Treatments are iffy. Throughout my life I’ve felt like a lab rat, with new drugs and therapies being tested on me to figure out how to make me more comfortable. Just having an autoimmune disease is strange; the body’s immune system becomes misdirected and attacks the very organs it was designed to protect. So, my immune system sees my whole digestive system as the enemy. Weird, huh?

When I was first diagnosed, very few people had heard of the disease. But, in my 5th grade class I was treated like a rockstar. Everyone wrote me get well cards, we exchanged pictures, I was sent teddy bears and trinkets and I felt special. I remember returning to school and everyone was so happy to see me. I wasn’t treated any differently, other than they wanted to hear my story, wanted to see my battle scars. I was healed, I was loved.

The adolescent years were much different.  I was out of the comfort zone of my tiny elementary school and mixed in with students from different neighborhoods and schools. It’s really a time that you’re trying to figure out who you are and where you belong. My friends from elementary school didn’t abandon me, but they moved onto other things. The disease made me fragile, so I wasn’t in the sports crowd. I don’t think I even had a crowd. I did like music and singing so I joined choir. I remember being excited when the Bears won the SuperBowl, sporting blue and orange and dancing to the SuperBowl Shuffle, but the rest of it is pretty much a blur. I guess it’s a time I mostly don’t want to remember.

There were no support groups around then and of course no Internet to find blogs or Facebook pages about Crohn’s. I isolated myself. I only felt comfortable at home, locked in my room, listening to ’80s music, mooning over Bono and reading books, books, books. I never told a single soul that I had a disease – and it’s not a sexy one. Symptoms include bloating, gas, diarrhea or constipation and vomiting. Yeah, not hot. So, I made my own private world by writing stories, falling in love with fictional characters and musicians, dancing around to Madonna songs and generally feeling alone.

I had convinced myself that I would never, ever fall in love. Or at least, no one would fall in love with me. Who could put up with my teeter-tottering health? Wouldn’t a boy want a girl who was “normal?” It didn’t help being made fun of for my appearance, which I think is one of the reasons it took me a long time to think I was even remotely attractive. I was on Prednisone, an anti-inflammatory steroid that is The Devil. There are lots of nasty side effects, but the one I hated the most at the vain age of 14 was the “moon face” it gave me. I remember standing on the stage for a choir performance at school. I looked around in the audience and locked eyes with one of my classmates. This particular boy proceeded to puff up his cheeks like a chipmunk. I was devastated. He made me feel hideous in one glance.

I’ve been hospitalized, put on shitloads of drugs, and had another surgery 20 years ago. When one has a chronic disease, it’s very likely that he or she gets used to the pain. And each year the threshold goes up a bit. I’ve been on medications which have mostly controlled my disease, but for the last 5 years I’d have one really bad day and two good days. Or, two good weeks and three horrible days. The tests they do on someone with a disease of the digestive system are worse than you can imagine, and I’ve had tests every year for the past 5; sometimes two, three or four in a year. It has been 5 years of going to the doctor, undergoing tests, finding nothing out, rinse and repeat.

Three weeks ago I woke up with excruciating pain in my belly. I vomited until there was nothing left. That didn’t make me feel any better. Instead of calling for mom, I had to call for my soon-to-be-ex husband who currently sleeps in the basement (yeah, weird – that’s my life). I was desperately in pain. He called the hospital, and the nurse said to bring me to the ER. Having gone to the ER plenty of times, I know it’s a lot of waiting and more tests while you’re STILL in intense pain. I did not want to go there. My mother-in-law recently had knee surgery so I asked my husband/not husband if he could call and see if she had any pain pills. She did. I know you’re not supposed to take anyone else’s pills, but they did make the pain tolerable and helped me go to sleep. the next day I visited my doctor and he determined I should be admitted to the hospital.

I’ve now found out that I need to have surgery. The scar tissue from my two prior surgeries has narrowed parts of my digestive tract and it needs to be removed. It will be a tough surgery – I know it is painful for quite a while and I’ll have to rely on the help of others. It’s different now. I have a son whom I completely adore, and in a way I feel like I’m letting him down. Before when I got sick I had others taking care of me; what happens when the one who you depend on is in the hospital or bedridden? However, he may see me at my worst, hooked up to machines, IVs and catheters everywhere, but he’ll also see me overcome it all and see me at my best.

I’m grateful to have a family that has been through this a few times that are willing to help me and entertain my son while I’m unable. I can either sit back and say it’s a fucked-up year, or I can look for any good in the situation. It will be a tough road, but I can handle it. In the end I will feel better, I’ll be Jill again. I’ll be Mommy again. In the meantime, perhaps this convalescing can help me learn things and grow. Waiting for the surgery means a liquid diet (and I don’t mean wine), lots of meds and rest. I’ve been reading, writing, listening to music, practicing meditation and studying a bit about Buddhism. I know sitting here worrying (though at times I do) will just strip today of its peace and not change a thing.

I’ve had to cancel social engagements, but I’m no longer isolated. Over the years I’ve realized that I have nothing to hide. I have a disease. It sucks, but it doesn’t define me and never has. Now when I tell people that I have Crohn’s they usually tell me that their cousin or nephew or neighbor’s uncle’s son has it, too. I think it’s made me more empathetic and sensitive towards other people. All those years ago I didn’t give anyone the chance to know about my suffering. Anyone who doesn’t have Crohn’s or IBS really can’t fully understand, but they can be an ear that listens to you when you’re scared, send you a good book to read, make you a fun playlist to listen to and just sympathize and say, “I’m here for you.” I’m quite lucky to have some thoughtful friends and caring family members.

They call Crohn’s Disease an invisible disease because to most people I look “normal.” Let me tell you, it’s not fun to hear someone say, “But you don’t look sick,” while I’m going through hell. And sometimes people who haven’t experienced a chronic illness might not understand why I’m acting differently. Sometimes I’m hurting too much to talk or conversely, maybe I just need my back rubbed. Other times I need to be alone and try to expunge all the details from my mind and focus on healing. I hope to never hurt anyone’s feelings, but when pain takes over, little else matters.

You can’t stop change and certainly there are a lot of changes going on in my life now. But I have a great support system and on the other side of this storm are clear skies and new beginnings. Sometimes you have to suffer before you get to where you want to be. And I have no doubt that my son and I will get to where we want and need to be. Life happens – it’s how you react to it that counts.

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