Warning: This post discusses chronic disease, and all of its glorious gross-ness. 

Recently, my husband and I have heard a lot of discussion about invisible illness and chronic disease in response to Mark 1:40-45. 

It reads…

40 A man with leprosy[a] came to him and begged him on his knees, “If you are willing, you can make me clean.”

41 Jesus was indignant. He reached out his hand and touched the man. “I am willing,” he said. “Be clean!” 42 Immediately the leprosy left him and he was cleansed.

43 Jesus sent him away at once with a strong warning: 44 “See that you don’t tell this to anyone. But go, show yourself to the priest and offer the sacrifices that Moses commanded for your cleansing, as a testimony to them.” 45 Instead he went out and began to talk freely, spreading the news. As a result, Jesus could no longer enter a town openly but stayed outside in lonely places. Yet the people still came to him from everywhere.

While reflecting with our peers, we discussed how many people are suffering silently and invisibly, whether it’s mentally or physically. After several of our friends mentioned the stories of people they knew who had invisible illness, I couldn’t hold back my silence any longer.

Most people look at me and think nothing is wrong. 

I am a petite, healthy-looking, young woman with brunette hair and freckles, married to a handsome blue-eyed husband who serves in the Air Force. On paper, things look pretty perfect.

I never imagined that I would relate most with stories about chronic illness and disease, but today, that is a reality close to my heart.

Here’s my story.

At the prime age of 23, I became extremely ill. In the span of two months, I lost twenty pounds, felt excruciating pain, was in the bathroom up to 18 times per day, was vomiting weekly, had chronic diarrhea, had to resign from a job due to inability to function, and was diagnosed with a lifelong disease that I never knew I had. 

It all began shortly after I started working as a veterinary assistant, a job that I loved. Within the first several weeks, I began experiencing sharp, shooting pain in my stomach that was accompanied by full-body heat waves, extreme nausea, and weekly vomiting. Not to mention incontinence; now, that’s a major blow to the self esteem of a seemingly ‘healthy’ 23 year old. 

At work, I would rush to the restroom literally every few minutes. There, back, there back, and there again… before I could even made it back.

The Symptoms

This is when most people ask, “Okay, Haylee, but whaaatt were your symptoms?”

As if it’s not obvious enough, I’m happy to paint an overly descriptive picture for all of you curious cats. I would experience the kind of bowl movements Ben Stiller perfectly enacts in the movie, Along Came Polly (here is that video, for those of you with morbid curiosity). 

For people with blessed bowls, you may not relate to this. And I totally understand why…I will be honest, I never used to understand the fear and pain associated with diarrhea either. After all, it had never been painful for me before. It was just something that occasionally happened after some refried beans or french onion soup (#gluten #foreshadowingmuch?). If anything, I thought diarrhea was great because it made things flow more quickly. Yup, real thoughts by Haylee circa 2015 and prior.

However, for those of you with bowls that throw daily mariachis parties, you know that this pain is extremely real. It was like no pain I had ever experienced. It was constant, and completely debilitating. It was like a full-body title wave, that I couldn’t escape. Wave after wave, you keep trying to come up for air, but the next wave is too fast and too strong that it drags you back down. There was no relief, even after eight weeks of constant trips to the restroom.

I thought, certainly, it had to subside eventually. 

I was wrong.

I finally realized the pain and symptoms would not simply go away on their own, like most temporary illnesses. Due to the nature of my work, I suspected that I contracted a parasite from animals. My then boyfriend (now husband), Greg (he’s the bomb.com and I say that quite literally due to the nature of his work), took me to urgent care, where the doctor gently informed me of his suspicions. He said he was not convinced that it was a parasite, though he conceded and ordered a fecal test. He suspected it was something more serious, such as Crohn’s or Celiac disease. 

Skeptically, I thought, “Hahhh! There’s no way. I have been healthy all of my life. There’s just a worm having a giggly-dance-party in my insides.” (Ironically, I am more terrified of worms than any chronic disease).  

The Fecal Test

The fecal test came back negative, just as he suspected, and all my blood-work was normal. He gently reminded me of his concerns that this was a more serious condition. 

Puzzled, I heeded his warning. My insurance at the time was only applicable in Colorado so I went back to seek further treatment. My primary care physician ordered a Tissue Transglutaminase Antibodies (tTG-IgA) test, which would indicate whether or not to move forward with diagnostic procedures, including a Colonoscopy and an Endoscopy. This blood-work screening showed that I had higher levels of antibodies than average, potentially indicating Celiac. I also tested positive for the DQ8 gene, which is linked to the disease (10% of those with Celiac carry this gene; the remaining 90% carry the DQ2 gene).

We went ahead with the Colonoscopy and Endoscopy. 

The Procedure

On April 21, 2016, I slept peacefully on an operating table, with tubes in both ends searching for abnormalities. 

Most people do not have this procedure until they reach the age of fifty. For those of you who do not know, colonoscopy prep is dreaded by many. And it was brutal on my already frail body.

The day before the procedure, I was directed not to consume any solid foods (which was particularly challenging for me, after 8 weeks of malnourishment). In the afternoon, I was instructed to begin drinking a foul liquid that triggers bowel-cleaning diarrhea. The goal is to completely empty the contents of the colon.

You read that right.

The girl who had been experiencing chronic, painful, watery stool for eight consecutive weeks (averaging up to 18 times per day) was instructed to take a go-go-juice that would make her have even MORE uncontrollable diarrhea. 

I literally could not fathom how my body could possibly expel any more contents from my depleted colon. It was as empty as empty can be, but colonoscopy prep is required. And I am a teacher’s pet, so I obliged. 

To paint a super clear picture, they provide you with instructions on how to convince yourself to put this nastyyyy liquid into your body: 

“To make a bad-tasting liquid prep like magnesium citrate easier to swallow, try one or more of the following if it doesn’t come flavored: add some Crystal Light or Kool-Aid powder (again, not red, blue, or purple); add some ginger or lime; drink it chilled; drink it through a straw placed far back on your tongue; hold your nose and drink it as quickly as possible; quickly suck on a lemon slice after you finish each glass; hold a lemon or lime under your nose while you drink; suck on a hard candy after each glass.”

Let me tell you, that horrible liquid brought on some of the worst pain I have ever experienced in my life. 

The *Juicy* Details

I would spare you the *juicy* (hey, oh!) details, but, we all know why you actually clicked on this post.

A powerful heat wave came over my entire body, and in an instant I was nauseous with uncontrollable diarrhea, extreme stomach pain, extreme weakness, extreme fatigue, extreme nausea, and finally… vomiting. It was a full body trauma, nothing like I had ever experienced before. It was out of this world in relation to any prior pain I had ever known. Truly unfathomable.

To put it bluntly, fluids were coming up both ends, the toilet was no longer sufficient, and the bathtub became my second method of disposal. My body was uncontrollably shaking and I had excruciating pain that left me weeping, begging God to make it stop. I was experiencing overwhelming feelings of despair, and genuinely thought, “I cannot do this. I don’t know how to get through this.” I simply did not know how to go on any longer.

I realize we hear people say “I can’t” quite often. But I truly could not imagine how to overcome that pain. 

It was one of those times, where there was truly nothing that could be done. I simply had to ride the storm. And to cry when I needed to.

Suffering is never alone.

During moments like these, it’s easy to question, “God why have you forsaken me?” But, I realize now, He was gently holding my shoulder weeping and suffering with me. As alone as I felt in that room physically by myself, I know He was there loving me greatly.

Even now, I quiver at the thought of experiencing even a fraction of what I endured that day. Unfortunately, however, since then I have experienced 10 times worse than what I endured that day… but we’ll get to that later.

Can I have a Corn Dog, please?

After a night of great suffering, I could finally see the light at the end of the tunnel, counting down from one hundred, while laying on the surgical table. Everything went silent.

It is worth quickly mentioning that my Gastroenterologist looked exactly like Cece from the TV series New Girl, which brought a sense of joy and comedic relief to my otherwise traumatic few days. 

When I woke up from the procedure, my parents were there with smiles on. We joked about the lack of glamour involved with Colonoscopies. I honestly did not think much about the Endoscopy, until after the procedure since my jaw was sore from the tube being guided down my throat into my small intestine. 

In came Dr. Cece (lol) who confirmed that my small intestine’s villi (seen via camera by endoscopy) were quite damaged (atrophied), which is an indicator of Celiac disease. She biopsied the damaged areas and would call back in several days with the results.

I am pretty sure there was mention of corn dogs, because I was quite delirious from the happy gas and all I could think about was… corn dogs. 

You have…Celiac Disease.

On April 28 of 2016, I was officially diagnosed with Celiac disease. 

Celiac is an autoimmune disease where the body attacks itself (specifically, the small intestine) in response to ingested gluten (a protein found in wheat, barely, and rye). The only treatment is to consume an entirely gluten-free diet for the rest of your life. It takes 1/300th of a crumb of gluten or 20 parts per million (naked to the human eye), to cause an immune reaction for a person with Celiac disease. That means if your burger is prepared on the same surface my food is prepared on, I should get ready to spend a few weeks in close proximity to a toilet. Gluten may also be found in many other miscellaneous products including toothpaste, medications, lipstick, vitamins, foundation, makeup, shampoo, conditioner, body wash, soaps, laundry detergent, cat litter, hairsprays (airborne products), pet food, paint, play dough, dry wall, and so forth. As a result, anything that enters the home must be checked for gluten containing ingredients. With over 300 symptoms, the impact of gluten exposure is tremendous for a person with Celiac disease. 

No Big Deal, Right?

This life altering news was accompanied by a nonchalant call from the nurse. 

She casually told me that I had a lifelong disease. Not a parasite. Not a minor bacterial infection that would soon pass. It was a lifelong disease. And I had it all my life, without even knowing. And I will continue to have it until our Lord brings me Home.

At first, I naively said to my mom, “Okay. That’s fine. It’s not that big of a deal. This shouldn’t be that difficult.

The next two years of recovery proved me to be quite wrong. 

You see, I innocently believed a gluten free lifestyle would result in immediate healing. I didn’t realize how unrealistic these expectations were. The villi in my small intestine were quite damaged (atrophied) as a result of immune attacks from gluten exposure.

Recovery Process

Because of this, I continued to be malnourished and underweight for at least six months, had to resign from another job (my dream job), was diagnosed with Osteopenia (pre-Osteoporosis) and Orthostatic Hypotension, got sick several times per month for two years (finally getting better now with vitamin supplements), have been in and out of urgent care every month, have had 50+ tubes of blood drawn from my body (my arms were so bruised after 19 were drawn in one day), have had 5+ diagnostic ultrasounds, 1 CT scan, 1 bone density scan (dexa scan), ongoing blood-work and tests, 4+ steroid shots in my Derrière, 3 hospitalizations, and in one month I had an ear infection, pink eye, the flu, and strep throat simultaneously.

If it weren’t for my husband’s incredible insurance provided by the military, I would be hundreds of thousands of dollars in debt. For that, I am unequivocally grateful.

And, I will be honest, there are certainly parts of Celiac disease that feel like first world problems, such as my inability to consume Mint Milano cookies ever again. However, the vast majority of the consequences are quite impactful over an individual’s life.

Devastating Consequences

From a religious standpoint, having Celiac disease is heartbreaking for a Catholic who can no longer consume the body of Christ (in the form of bread). It still aches my heart, though I am learning that God’s love is not bound by the sacraments or gifts that He has provided for us.

From a social standpoint, living in a highly food-driven culture in the South is very difficult to navigate. So few people are educated about the disease and even gluten, that eating out is not a feasible option. Cross-contamination risks are high. This has resulted in feelings of isolation, being the only person in a group of friends who cannot eat. Of course, I do not let this stop me from enjoying the company of others, but after two years of being unable to fully participate, it can weigh on the spirit at times.

From an employment standpoint, Celiac has been devastating. As you read before, I was unable to function at my vet assistant job, and needed to prioritize my health by resigning. Several months later, I was offered my dream job as a marine mammal specialist. Naively thinking I would recover quickly, I accepted the job knowing it would not begin for several more months. I figured that would be plenty of time for my body to heal. I absolutely loved that job; it was physical, active, engaging, challenging, and gave me a huge sense of porpoise (bahaha…#punny). Unfortunately, after four months of working, my body continued to decline and was not progressing. After switching to the night shift, I lost even more weight and had to make the difficult decision to resign. For a second time. This was truly heartbreaking, but of course I had to prioritize my health yet again.

Gratitude

In spite of all of this misfortune, there were several major positive life events that took place. Two days after being diagnosed with Celiac, my beloved boyfriend proposed to me and we entered the beautiful stage of engagement. That time of our lives was the perfect dichotomy of intense joy, yet utter chaos. For those of you who do not know Greg personally, he is truly the most loving, kind, supportive, hard-working, compassionate, loyal, and faithful man. On our wedding day, we washed each other’s feet as a sign of our love and servitude toward one another. Since then, he has washed my feet several times when I was too sick to move. What a man, am I right?!

Did you ever get better?

In February of 2018, my symptoms were finally beginning to subside…two years after my original diagnosis. I began to apply to my dream marine mammal jobs again, and felt like I was getting my life back on track. 

Until, I suspected something else was wrong.

 People diagnosed with Celiac (after the age of 20) have a 33% chance of discovering a second disease within one year of diagnosis. 

I fell into that category.

Chronic Illness Journey Continued…

I’ll end this post here for now. As you all know, my story continues and involves several more diagnoses of other lifelong diseases. I will be posting about those soon, along with my most recent diagnosis, so please stay tuned. In the meantime, please checkout my post about my diagnostic laparoscopy gone wrong, here.

If you’ve read this far, give yourself a pat on the back! Thank you for caring about my story. Comment below, introduce yourself, and please share your story.