Having an invisible illness is a double-edged sword. On the one hand, people usually don’t treat me any differently than any other able-bodied person. On the other hand, people usually don’t treat me any differently because I “don’t look sick.”
I’ve had Crohn’s Disease for over 20 years now, and I’m only 28 years old.
If you’ve never heard of Crohn’s Disease, that’s okay–most people haven’t. According to the Crohn’s and Colitis Foundation of America, “Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract.”
In other words, I’ve spent most of my life taking multiple prescriptions and over-the-counter medications, carefully monitoring my diet, and struggling with my weight. And I’ve spent an unusual amount of time in pain, in the bathroom, and in the hospital. Plus I’ve spent way too much time sleeping, farting, pooping, burping, and throwing up.
And I’m among the lucky ones.
I respond well to treatment. I do well on a high-fiber diet. The severity of my disease is only moderate. I’ve only been hospitalized once. I’ve never had surgery.
Many people with Crohn’s Disease (or its friend Ulcerative Colitis) are in worse condition than I am.
But I still want to share just a little glimpse of what it’s like to be “lucky” with Crohn’s Disease.
Last Saturday I drove to Greenwood to spend several days with my dad.
Late Sunday night I woke up feeling feverish. My incessant burping–yes, I burp consistently albeit quietly throughout the day–was different than usual.
I recognized the signs of needing to throw up, so I dragged my freezing and feverish body to the bathroom. I was just in time to violently purge into the toilet, my entire body convulsing to the point that I felt utterly weakened afterward.
I brushed my teeth and poured myself a glass of water, feeling dehydrated. I felt a bit better after several sips, and I slowly finished off most of the glass. I tried to go back to sleep, but due to the discomfort of my fever, slept rather fitfully.
I’m not sure how much later I woke up again with the sudden urge to vomit. Luckily one of my hidden talents is getting to the bathroom very quickly. I completely emptied the contents of my stomach, including all the water that had felt so refreshing.
When I was done throwing up, I again felt dehydrated, but I was wary of putting anything in my stomach. I brushed my teeth again and refilled my water glass, but only took a single sip to satiate my thirst.
Each time I woke up during the night, I took a small sip of water. Luckily I didn’t throw up again.
I spent most of Monday exhausted and feverish. I only ate two small bowls of Cheerios all day, but I did drink a reasonable amount of water and of juice. My fever finally broke sometime Monday night, and I woke up feeling much better on Tuesday morning.
Alas, it was simply a brief reprieve.
As I already mentioned, I burp incessantly. I also suffer (or rather, the people who live with me suffer) from frequent gas.
Tuesday night, I hit the Crohn’s trifecta of loud bodily functions. My burping was worse than normal. My farting was worse than normal. My poor bloated belly was gurgling so loudly that my entire body felt the vibrations.
But honestly, if my body had just been a bit noisier than usual, I wouldn’t have thought twice about my experiences. My stomach gurgles have caused strangers to peek over at me in public, with interesting looks of surprise when they discover a petite young woman making such stomach sounds.
Alas, my adventures in Crohn’s Disease were only warming up. Eventually I felt a particularly forceful fart coming on. Any good Crohnie knows to never trust a fart, particularly one that needs even a smidgen of effort to release.
I darted away to the bathroom only to shit pure liquid accompanied by the most noxious fumes. I made such explosive noises that I almost wanted to record them. My epic diarrhea sounded more like the sound effects of a child’s obnoxious potty book than anything that should actually happen in real life.
This scene replayed itself many more times that night, and well into the night, much later than I would have liked.
When you literally can't stop farting or burping long enough to fall asleep… For over two hours… #CrohnsSucks #CrohnieLife #Crohns
— Brita Long (@BelleBrita) March 16, 2016
I omitted the painful diarrhea from my tweet. It felt a little TMI.
Unfortunately, the bloating, bad gas, and frequent diarrhea continued into Wednesday. In order to get back to Duluth without pooping myself during the drive, I had to take anti-diarrhoeal medication, which is generally a no-no for Crohn’s patients.
Only yesterday did I finally feel back to normal. Even then, I was cautious with my food. I normally don’t have many issues with food, but to be on the safe side, I mostly ate carbs and avoided raw fruits/veggies.
That is just a small sampling of what life is like for a lucky Crohn’s patient.
I lay my life bare for the world to read in the hopes that my story will inspire compassion. Not all physical disabilities can be seen on the outside. People with invisible illnesses often need kindness, patience, understanding, and accommodations just as much as people with more obvious illnesses or disabilities.
The next time someone tells you they have a condition you’ve never heard of, I hope you’ll consider my story instead of blurting out, “But you don’t look sick!”
Join me in spreading awareness for invisible illnesses by sharing this post.
I may have laughed out loud BUT I promise it’s not at you, more out of camaraderie and been there. I had undiagnosed Celiac Disease which basically allowed me to know where ALL the bathrooms are wherever I’m going. It made me chug Pepto Bismol, Gravol and Immodium in order to leave the house. I ate weird things like Sauerkraut by the bucketful, Kefir and probiotics. I wrote about my diagnosis on my blog as well!
So that’s my story! So glad you’re willing to share the ugly side of YOUR life.
I’m so glad you’ve since had a diagnosis! I have two good friend’s with Celiac Disease, so I know how challenging it can be too. I’m glad I could make you laugh out of camaraderie 😉
Oh no. That sounds awful! I have a friend who has Crohn’s disease and had a particularly bad situation that we had to escape from when we were touring the monuments in DC 🙁 I hope you’re feeling better!
Your friend really appreciates your understanding! It can really suck when people just don’t get it, especially since those of us with invisible illnesses tend not to complain over every single symptom.
I wonder if people say “you don’t look sick” as a compliment. I ran into a gal finishing chemo the other day, and while she has no hair, she looks fabulous… Maybe I should keep comments about looks to myself…
So can Crohn’s patients not take Pepto? That stuff is my lifesaver. I’ve self-diagnosed myself with bile malabsorption, as it fits my specific type of semi-IBS symptoms (yes, I should talk to a doctor most likely). Definitely fully treatable with diet choices, but I wouldn’t survive without Pepto!
I think there’s a difference between saying, “You look fabulous!” and “But you don’t look sick.” The first is definitely a compliment. The second often has this underlying suspicion that you’re lying. I’m not saying that’s always the intent–I think it’s usually an instinctive reply that people don’t even think about saying. I will say that in regards to commenting positively on someone’s appearance, if you know they have any sort of illness, you should usually avoid commenting on their weight. I’m not going to blog about it here because I actually plan on pitching it as a freelance article, but the compliments I received while I was underweight continue to fuck with my head. Like a lot.
I’m not a doctor, but I know I’m not supposed to take Pepto or Immodium or anything like that. I took Immodium to get through a wedding unscathed about 14 months ago, and I spent most of the next day in pain.
That’s a very good point about the weight. The same chemo patient definitely took off a lot of pounds but the ‘skinny’ you see with clothes on is not the truth. I hate that being underweight is so idolized. Times of my life when I struggled (specifically 2009, being depressed, unemployed, and not eating), a compliment to weight loss could have been devastating.
I’ve heard the phrase, “But you don’t look sick!” and many variations more times than I can count. Strangers, yes, occasionally responded this way, but family, friends, and acquaintances were the more frequent culprit, as I usually don’t need to tell strangers that I have Crohn’s Disease.
As I mentioned above, I’m 28 years old, and I’ve had Crohn’s Disease for over 20 years. That means my first 10 years of having Crohn’s Disease were in elementary, middle, and high school. I wouldn’t refer to my immature and inexperienced school-aged peers as cruel or ignorant. Technically they were ignorant, but in general that word has a negative connotation. Once I finished college just shy of 22, I certainly encountered less people who uttered this common phrase, but by no means did I completely stop hearing it.
Tone is difficult to convey across the Internet, so I’m sure you didn’t intend to come off as belittling my lived experiences. If you yourself have an invisible illness, then I’m delighted to hear that no one has ever responded this way to you. However, I assure you that I’m being completely honest about my firsthand experience in living with Crohn’s Disease and trying to explain it to others. Furthermore, my friends with Crohn’s Disease have encountered the exact same thing.
“But you don’t look sick” is so commonplace for anyone with an invisible illness that there are multiple memes of it, and a website by the same name.
Oh my gosh. Also, I can’t believe people would comment on your weight? I didn’t know skinny shaming was a thing for a long time.
Thank goodness for honest, open people like you! I don’t have a chronic disease but my brother has UC, and a similar story and resulting frank humor about it. On the one hand, (mostly) invisible chronic illnesses must absolutely suck more often than just occasionally. On the other, I’m super thankful for modern medicine’s ability to make them invisible in the first place, because it allows people like my dad and brother to still be alive, functioning humans. (I’m sure you can appreciate that horrible duality way better than I do.)
My Crohn’s is so mild that I can generally trust my farts. …except that one time when I pooped myself AT WORK a few months ago. Now, whenever I come home and say something bad happened at work, the husband asks, “did you shit yourself again?” Puts everything right back into perspective. Lol.
Love you & had fun hanging out tonight!! ❤L
I’m so sorry you have to live with this disease! I’m sure it’s so hard but you’re an incredible woman and always seem (at least online) so positive about it! <3
I’m so glad you’re so honest on your blog! People (including me) need to know these things. As you’ve said many times, it’s hard to tell from just looking at you or even being around you for short periods of time on good days. So thank you for sharing and educating us!