May is Celiac Disease Awareness Month. Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide, but only about 30% are properly diagnosed. Blue Yonder associate Bryant Miller shares his story about being diagnosed with the disease, which is considered a disability under the Americans with Disabilities Act.

I used to be fun. I used to be carefree, easygoing, and down for any adventure at a moment’s notice. I used to be a star employee at work, easily putting in 60-70 hours each week in the office. You know, a real go-getting overachiever. And I hate that I’m none of those things anymore.

How My Road Led to Celiac Disease

So, what happened to me?

About a decade ago, my body and my mind completely broke down. I was chronically sick, my vitamin and hormone levels were totally depleted, my thyroid and gallbladder both called it quits, and I was overwhelmed with crippling anxiety. Talk about no fun.

Throughout my 30s, I bounced from one health care specialist to another, desperately seeking answers for why my body had betrayed me. Then one day my primary care physician said, “Hey, why don’t you just try not eating gluten for a month and see how you feel?” “How hard could it be,” I naively asked myself.

Spoiler alert: that month was terrible. I quickly learned that gluten is in everything — food, medications, and beauty supplies — and it is nearly impossible to lead a normal life while avoiding it. But at the end of those 30 days, I felt remarkably better. Then more testing would later show that yes, indeed, I had developed celiac disease. Lucky me.

What Even Is Celiac Disease (CD)?

It’s an autoimmune disease where gluten — a protein found in wheat, barley, and rye — causes my body to mount an immune response that attacks my small intestines. Physically, all my joints will be inflamed, and my gastrointestinal tract will experience distress for about a week. My skin will break out, and I’ll experience intense brain fog that makes it difficult to even work. As fun as all that sounds, what is even worse is that it can take my small intestines about 6 months to recover from being “glutened.”

Long-term, if untreated, celiac disease can cause a whole host of downstream issues, such as vitamin deficiencies, infertility, intestine cancer, and heart disease. Untreated CD also makes it highly possible to develop more autoimmune diseases, like MS and diabetes.

Denial, and the Eventual Acceptance of a New Normal

I tried for years to still be the old, carefree Bryant who could go anywhere and eat anything. I tried to not be a burden who required any special treatment at restaurants with friends or when traveling for work. I tried to keep “normal” groceries in my kitchen to cook for my husband. I tried, and I failed. I was constantly getting glutened, doing even more long-term damage to my body.

And that’s when I stopped being myself and started respecting my disease.

I started eating at the same few restaurants that I knew were diligent about keeping me safe from cross-contamination. I started asking people a million questions about the gluten-free cupcakes they baked for me because even a few specks of that pesky protein could set me back for months. I started learning how to read nutrition labels to decipher these unspeakable ingredients and how to tell if the autolyzed yeast extract came from barley or from corn. (What the heck even is autolyzed yeast extract?)

I truly started to advocate for myself and refused to settle for any ambiguity.

How I Found Respite in Remote Work

Fast forward to nearly four years ago when I started my remote job here at Blue Yonder. I remember going through my orientation paperwork and came to the section for disabilities. There it was, in black and white, right in front of my face: celiac disease. For the first time ever, I checked that box and identified myself as a person with a disability. I was crushed, and I didn’t tell a soul.

But remote work turned out to be the great equalizer for me. I could cook all my own meals at home and not have to worry about figuring out how to feed myself safely — daily — while working in an office. I didn’t have to worry about being excluded from office birthday cake or potlucks or catered lunches while we were in day-long meetings. I didn’t have to feel anxious about getting sick at work and experiencing debilitating pain in front of my co-workers.

I could log on to a video call, smile, and for a moment feel like my old self again. I could be Bryant again in a way I hadn’t experienced in years. I didn’t have to talk about this stupid disease every day the way I would have to if I worked in an office.

I know I’m not alone in this feeling. For many people with disabilities, remote work can be a saving grace that makes us feel like we’re on equal playing ground. It can make us feel normal.

What Life Looks Like Today

My world today looks much different than it did in my wild, carefree days. I moved to a very small town where I can lead a slow, gentler way of life. I wake up, have coffee with the cats and the chickens, log on for work, cook all my own meals, take the mountain of medications that keep me healthy, go to the gym, and watch the sun set over the ocean.

I recently read something from the Celiac Disease Foundation that stopped me in my tracks: The treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer. This phrase made me very emotional. I knew that my disease was challenging for me, my loved ones, and especially my husband, but seeing the difficulty in writing both gave me some level of relief but also a crushing blow.

This is the part of my blog post where I had a concluding paragraph that reiterated that I am, indeed, no fun these days, but when I shared it with my husband, Keith, he was vehemently opposed to what I wrote. So, I’ll share his words instead as my conclusion:

“You are still fun — it just looks and feels different. What you can’t be is impulsive. You have to plan your fun. Spontaneity is what you’ve lost completely. There is no more ’we will figure it out when we get there.’ Tell them you are fun with an asterisk.”

Learn more about celiac disease from the Celiac Disease Foundation.