*This is by far the most personal post I’ve ever written but I think it’s important for you to know the abbreviated version of the whole story, even the hard parts. Living with a chronic illness isn’t easy but I’ve found ways to live triumphantly with UC and I hope my story encourages others to do the same.
“Mom, something is seriously wrong with me,” I said hesitantly through the phone.
The concerned musings of a mother. “Do you want to go the doctor?”
“I think I need to. Something is seriously wrong.”
A foreboding sense of dread filled my oily stomach as she picked me up and we drove to the minute clinic. I tried to swallow the feeling of impending doom but it stuck too thick in my throat and I choked on waves of nausea. Something is seriously wrong.
At barely twenty-two years old, I had suffered through the last remaining months of college with various, nonspecific symptoms: fatigue, irritability, GI upset. In the midst of other major life changes, including graduating and getting a job, I ignored the signs, attributing them to the stress of transition. How could I anticipate the diagnosis surreptitiously waiting for me? I had no clue what was coming.
The practitioner skimmed over my paperwork, scanning the pieces and compressing them together in an attempt to form a whole diagnosis.
“Considering your symptoms, I think you might have hemorrhoids.” The words fell off his tongue like an everyday occurrence, like a verdict not so terrible. His face, middle-aged and plump, was plastered in a smile accustomed to customer-service and handing out lollypops.
My face remained stoic, staring at him in disbelief, un-amused by his cheerfulness. Drained of all energy, I felt tired in a way I had never experienced, a deeply rooted fatigue that settled in my bones.
I stared at him for a moment longer, trying to contain my words but then I woke to myself. “Excuse me,” I started as anger began to simmer and boil, crowded into my stomach with the beginnings of my disease. A miserable mixture. “I realize I just graduated from nursing school and I am not qualified to make diagnoses. I also realize I don’t really know what hemorrhoids entails, except what I read in school. But I can guarantee you, this is NOT hemorrhoids!” The words launched off my tongue with frustration as tears brimmed on the surface of my lids, threatening to overflow.
Clearly, not my finest moment of patience.
The practitioner stuttered nervously, surprised by my abrasiveness. My mother rang her hands nervously in the plastic chair next to me, looking at me with the same confused feeling.
“Well how about I refer you to a gastroenterologist. She may be able to give you more answers.”
I stomped out, more discouraged than when I entered. In some foolish way, I had hoped for a quick fix, a simple answer that would explain my symptoms and satiate my internal voice of impending disaster. But I disregarded his suggestion and suppressed the truth that I inherently recognized, refusing to see or acknowledge it, waiting for the appointment with the specialist.
I don’t think I said thank you. I don’t think I said anything. I should probably go back and apologize to him.
Something was seriously wrong.
After months of difficult graduation decisions and some extremely emotional experiences, I landed back in Dallas close to my family. I wasn’t completely sure I wanted to be there, but I had no better options. Thankfully, God placed me right back in their midst, knowing the support I was going to need from my family over the next months and years.
Two weeks after my embarrassing outburst at the minute clinic, I endured my first colonoscopy bravely and ignorantly, like a new recruit heading off to war. With only some basic training in nursing knowledge, I had no idea of the damage I would incur on the battlefield of disease and the devastating toll it would take on my body and my emotions. But I put one foot in front of the other, knowing I had no other choice, the bravery of unfamiliarity and responsibility.
My parents guided into the surgery center before the sun came up and I listlessly complied, weak and dejected and broken-hearted. Due to the sedation medications, I woke up several hours later, completely ignorant of the procedure and the passing of time. By far, the best way to do a colonoscopy. It’s not exactly something you want to remember vividly.
“Why am I crying?” I said through massive crocodile tears, sobbing in my post-anesthetic state, trying to wake up. I couldn’t contain my uncontrollable emotions or decipher their origin.
“That’s a natural reaction to the medications for some people. It will wear off soon, nothing to worry about,” a kind voice said next to me and she hooked up some fluids to my IV line.
My parents leaned over me, concern etched onto their faces, and small smiles on their lips. I must have been comically drugged.
“What’s happening,” I asked as I tried to look around, my head spinning. My mother cooed at me, “shh, just relax.” I had already surrendered my last shreds of dignity on the procedure table and now I felt helplessly out of control from the medications. What else could I stand to lose?
“Oh gosh, oh gosh.” I frantically scanned the room for a basket or a bucket or anything. The nurse appeared out of nowhere and caught me at the last second, right before I vomited. Now I literally had nothing left in me.
“You have ul-cer-a-tive co-lit-is,” she said confidently, looking up at us as she pushed her glasses back onto her nose.
A look of complete confusion passed over my dad’s face as he asked, “she has what?” Two words previously unknown to them.
“Ul-cer-a-tive co-lit-is.” She couldn’t help but pronounce every syllable as her Indian accent spilled over onto the words. “I would classify it as severe, left-sided colitis.”
My first gastroenterologist was a fiery Indian woman, only a few inches short of five feet tall, with enough personality to make up for her small stature. She gazed up at us; her long black hair expertly pulled back behind her, and explained the details of my disease with gusto and over-pronunciation.
In the wake of my anesthetic stupor, I tried to register the words. Ulcerative colitis. I had feared as much. My parents looked at the doctor, then me, and I stared at the floor. No one knew what to say.
It wasn’t the worst news I could’ve received that day. The doctor could have soberly informed me of a life-threatening illness or the need for emergent surgery. I could’ve been admitted straight to the hospital or told I needed to quit my job to take care of myself. Instead the doctor flung a foreign diagnosis at me and I went home with pathetic pamphlets explaining the ABC’s of IBD. I don’t remember crying, or feeling much at all in the midst of all the fatigue and pain. Without any excess energy, I couldn’t quite muster the ability to care.
Instead of facing a life threatening, quickly debilitating diagnosis, I now had to adjust to a completely new mindset, one that included UC for the remainder of my life. And as a brand new twenty-two year old, you don’t routinely try to comprehend the “remainder of your life.”
For the past five years since my diagnosis, I’ve fought against my disease with medications, infusions, colonoscopies, and a plethora of organic, non-genetically modified foods. Thankfully, I’ve been able to abandon my love-hate relationship with steroids, since I used to pop Prednisone like a child with innocuous candy. My face has inflated and deflated several times now due to the unpleasant ramifications of the drugs, causing everyone confusion. I used to look fat, and then I lost ten pounds in two weeks, back and forth. A cyclical game of immunological cat and mouse.
I’ve also abandoned a life of processed foods in exchange for a strict, specific diet that focuses on gut-healing foods and eliminating any inflammatory triggers. Cooking at home all of the time provides it’s own set of challenges but I’ve found it rewarding and actually extremely delicious. No more bread or sugar or processed foods. No cheat meals including fries and a margarita. I’ve sworn off the artificially modified in exchange for the organic, combating my own immune system with a plethora of creative foods. My diet may seem impossibly restrictive to some, but in light of the alternatives, it’s a saving grace to be able to heal yourself with food, rather than more harsh medications.
Faced with a life-long chronic illness, I’ve also battled my own emotional and spiritual conundrums as well, all the “why me” questions that accompany such a dramatic life change. Working through fear, anxiety, entitlement, and pride, I was forced to determine my theology on sickness, healing, and the Lord’s goodness. Divulging myself of the entitlement to life-long health, I’ve gained freedom in relying on God amidst the unknown, welcoming the childlike trust that accompanies such reliance.
Some days I feel more positive than others. On those lonely, dark days I am tempted to swallow those bitter feelings whole, letting them rot inside me. The adversarial voices in my head speak words of discouragement, loathing, and resentment. But I choose the light; I have to choose the path lined with optimism, as arduous as it seems in those moments.
With a fat face and chronic fatigue, I lamented over my ability to find a man who would willingly sign up for all my issues. Crying to my friends one day on the porch, little did I know, one of the guys was thinking, “I’m up for it.” This attractive young man wasn’t scared of disease or the life-long promise of difficulty. He wasn’t swayed by my tales of harsh medications and physical restrictions. He simply wanted me, and contrary to all my fears, he married me in November of 2012.
Since then, Seth has been the single most helpful influence in my healing. Soon after we got back from our honeymoon, he adamantly advocated the strict diet we now follow. He looked up articles, invented recipes, and hugged me when I cried in discouragement. To this day, he cooks for me on days when I work and doesn’t complain about not being able to eat out or go to Africa. Again, the Lord knew what I needed and provided abundantly.
Occassionally my practitioner bounces around the word “remission,” a mythical amorphous ray of hope in the midst of a life-long battle. Will I ever get to full remission? Is the Lord good even if I don’t? Yes, He’s always good, even amidst the challenges He allows us to walk through with his help.
Now I’m doing everything in my power to maintain my homeostasis through medications, diets, and supplements. Now I waltz into my GI appointments, say “everything’s good!” and prance right back out, when I used to turn into an emotional mush of fear and depression in her office.
After my diagnosis, I needed a coping mechanism, a way to fight emotionally against my disease. Using my most natural inclination, I started writing. I wrote about the facts, my feelings, my emotional and spiritual struggles. And then I started sharing some of that writing through this blog thirtyeightfive.com. Through the magical community of the Internet, I’ve been able to learn from and encourage others and hopefully provide some semblance of hope in the midst of a life-long struggle.
I’m thankful to be at a place of peace with my disease, no matter how long it lasts. And if you suffer from a chronic condition, I hope this gives you a bit of peace and hope as well. We are given enough strength for today only, and that’s all we need.