Each time I share my story of living with an illness I feel stronger. I’m not embarrassed to talk about it anymore.

By Jenny Lelwica Buttaccio
Updated February 14, 2018
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In 2012, I was nearing the end of my third year of being ill. I sat slumped in a wooden chair in my doctor’s office as he told me I needed to apply for disability. For years, persistent Lyme disease and myalgic encephalomyelitis (also known as “chronic fatigue syndrome”) altered every aspect of my once vibrant life—even leaving me housebound and bedridden for months at a time. Although I could barely sit, stand, or walk, I held onto the belief that I would one day get better. Hearing my doctor label me as “disabled” hit me like a sucker punch to the gut, and the gravity of my illness overwhelmed me. At that moment, I felt like a failure—incapable of helping myself or being helped.

There was no foreshadowing of the day these devastating illnesses would creep up on me. By most people’s standards, I lived a healthy lifestyle—exercising regularly, eating organic foods, getting plenty of sleep. I practiced as an occupational therapist for nearly a decade. I taught Pilates, traveled the world, and, eventually, met my husband. On the outside, I didn’t appear sick. However, on the inside, two, insidious illnesses were slowly hijacking my body.

My life changed in 2009 when a multitude of debilitating symptoms began to emerge. I was profoundly fatigued, and my body felt as though unseen weights were pulling it towards the ground. When I stood up, my legs trembled, and I worried they would crumble beneath me. My spinal cord and brain burned continuously as if they were being seared over hot coals. I couldn’t sleep without taking handfuls of pills. But all of these symptoms paled in comparison to the light and sound sensitivity that rattled my nervous system––the severity of which forced me to spend months in a silent, dark room, alone.

Finally, the years of battling unexplained symptoms became too much for my body to handle, and it collapsed. That day, in the doctor’s office, I was faced with the stark reality that my life no longer looked the way I had envisioned—and wouldn’t be turning around anytime soon. A few months after my doctor’s appointment, I begrudgingly filed the disability paperwork. The idea of being disabled was humiliating. I worried people would think I was lazy, faking my illnesses, or undeserving of government assistance, so I kept the process a secret from nearly everyone.

Throughout my life, I was known for dropping whatever I was doing to help someone in need or congratulate them. But my ability and desire to help others came with an unexpected cost: My family and friends viewed me as strong—capable of single-handedly managing any situation that came my way—including a battle with illnesses that were slowly stealing my life. As my symptoms escalated, I became disconnected from the world. Who could I call for help? Who could relate to the despair and desperation I felt?

In the fall of 2014, I sat before the judge as she questioned me about my diagnoses. Within the first five minutes, I could glean from the judge’s tone that she had her mind made up about my case. She discredited my diagnoses, tore down my doctors, and mocked my choice of treatments. “You don’t look very sick to me,” she said. “Aren’t you really just a depressed housewife looking to get out of your marriage?”

I was livid and stunned by her insulting question, though, I managed to utter, “Excuse me? That’s not true!” while fighting back a sea of tears.

No, I wasn’t depressed, lazy, or faking my illness; I wasn’t hoping to get disability so that I could end my marriage. Unfortunately, I was dealt a pair of medically misunderstood and controversial diseases, but that didn’t mean my symptoms were any less severe than other medical conditions—even if, in the judge’s eyes, I didn’t look sick enough.

The two-hour hearing was an epic disaster. When it was over, my energy levels were depleted, and my husband had to help me walk back to the car. Four months later, I received a 35-page denial letter stating that I could work a sedentary job. I desperately wanted that to be true, but swallowing 60 pills a day reminded me I was still very far from beginning a new career, even a less demanding one. The next day, I met with a disability lawyer and filed an appeal.

The five-year anniversary of when I first applied for disability has come and gone, and I’m still awaiting a final decision. Although I’m steadfast in my journey towards recovery, my disability case remains pending.

Invisible, chronic illnesses like mine—ones you can’t see just by looking at someone—wreck people’s lives and cause multifaceted, debilitating symptoms. I’ve seen marriages be ripped apart by the strain of living with a spouse who was constantly unwell. I’ve seen parents sell their beloved homes to pay for their child’s ongoing medical care. I witnessed patients make the difficult choice between buying food and necessary prescriptions.

But over these five years, I’ve also become empowered.

Each time I shared my story with other patients, I felt stronger, and the shame and embarrassment I had once felt began to recede. Over time, I’ve come to understand that it is more important to talk openly about my story to help others than it is to hide my head in shame. It took me awhile to get to that point, but I’ve finally come to terms with where I’m at in my life, and I’m not embarrassed to talk about it anymore.