Guest Author Lilly Stairs: IBD Patient and Patient Advocate Dedicated to Advancing Research
Published: March 28, 2018
Each of us encounters defining moments in our lives. Moments that fundamentally shape who we are, moments that reveal our true selves. I’m convinced that our deepest selves are never fully unmasked until we are faced with moments that rattle us to our core. Moments that challenge us to make a life-altering decision. Moments that test our limits. Moments lost in the unknown. Moments that inflict a pain we never imagined possible.
It is precisely in these moments that I unearthed my truest self. And that self was discovered in a hospital bed.
She needs her morphine. Please. Please can someone send a nurse in?
I hear my mother’s voice call frantically in the hallway. But it’s just barely there, beneath the veil of all encompassing pain.
I was only a few days into my hospital stay. Finally admitted after 3 consecutive trips to the ER in one weekend. You see, the doctors didn’t believe me. Just another young woman feigning chronic pain to access drugs.
I pitifully attempted drinking water to calm the drumbeat of pain wreaking havoc inside me. But now I’ve only made it worse.
I close my eyes, desperate to be serenaded into a different place, different time. Anywhere. Anywhere but here.
I am woken by the flicker of fluorescent lights and a needle puncturing my skin. It is five o’clock in the morning. Time to extract another vial. A little more life.
The medical students traipse in shortly after. Barely briefed on my case, they poke and prod, applying pressure to my broken body, singing a never ending chorus of questions.
She is exhausted. No more questions. Please send the doctor in.
My mom was my advocate when I couldn’t be for myself. Sleeping on a cot on the hospital floor. Demanding the doctors do everything they could to uncover answers.
It has now been seven days. Why don’t they have answers? What’s wrong with me? Am I going to die?
I am administered one final test.
This is it. The last test we can try, and then there is nothing more we can do.
I know they don’t believe me. In their minds I am a liar, a fraud. A girl determined to get a free ride out of her college classes or maybe just a girl hooked on the drip drip drop of liquid pulsing through my veins. Numbing my existence.
Amidst a sea of wires, I swallow the pill. They tell me it will take pictures as it moves through my digestive tract every three seconds. I am not allowed to eat.
Eat? I haven’t had a morsel of food in a week. I am down 30 pounds.
I wake again, my parents are there and a doctor too. At least it’s the nice one. He sits down, eye level with me now, and carefully fans the images.
My jaw drops. My small intestine is wrought with bleeding ulcers.
You have Crohn’s disease.
Finally, an answer.
The conversation is foggy in my mind save for one line that will always stay with me.
“You will have this disease for the rest of your life.”
The rest of my life.
A few more days pass as the hustle and bustle of life goes on around me. I am administered steroids via IV. Pain never escapes me, but I begin to feel just a little more human again.
I finally feel well enough to open my laptop and consult “Dr. Google”. This is my second chronic illness diagnosis in the span of 6 months, the first being psoriatic arthritis. I am determined to understand.
I couldn’t tell you what magic search combination spit out autoimmune diseases but all I can tell you is that it did. And it changed my life.
In that moment, lying in the hospital bed, 30 pounds lighter and brimming with pain meds, I unlocked my reason for being.
A crashing wave of emotion enveloped me. I was angry that I had never even heard the term autoimmune disease. I was devastated that this was my new normal. But I was also hopeful. And more importantly, determined. Determined to do everything in my power to fight for fellow patients so that someday, a young 19 year old girl wouldn’t even have to dream of enduring the hell that brought me to that moment.
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Fast forward six years and I am beyond fortunate to say that I am in remission. And I am in remission because of fellow patients.
Patients saved my life.
Because of the brave patients that took part in clinical trials, the biologic I take was approved by the FDA. The treatment that I receive every two months allows me to live a relatively “normal life.” And I couldn’t be more grateful. Because of this revolutionary medication, I have been in remission for four years from my autoimmune diseases.
That is why I serve as the Head of Patient Advocacy at Clara Health, a company working to connect patients to clinical trials and support them throughout the process. The hope and determination I felt in the hospital is manifested in my work with Clara. Every day, I get the opportunity to hear about the cutting-edge therapies in clinical trials for IBD and arthritis. I know that there are countless patients who have failed current options available or long for a treatment that doesn’t involve needles or maybe even a treatment centered around dietary changes....and all of those are currently available options via clinical trials.
Now more than ever, my veins pulse with hope and determination. Hope for a better future for patients and a determination to do everything I can to help us get there.