Your Pity Isn’t Welcome Here

“I wished everyone knew how precious life was.” A deeply affecting recounting of a life lived with cystic fibrosis…

by: Drew Dotson

[childhood]

There’s something you should know. 

I have cystic fibrosis.

But don’t feel sorry for me.

As a kid, I kept my illness under wraps. I worried other children might fear me because I was different. I also couldn’t bear the thought of being categorized as sick or deficient in some way. But most of all, I preferred to live in a pity-free zone. 

I didn’t want my classmates to know I was supposed to die young. In western culture, even adults struggle to acknowledge and discuss death, much less explain it to children. If my peers understood I wouldn’t be their best friend forever, would they still invite me to birthday parties and sleepovers? 

There were too many unknowns.

Yet a part of me wanted to broadcast my disease and the toll it took on my body. 

Every day required hours of respiratory therapy, but no matter what I did, I still coughed. I fantasized about a life where I could cough freely without eliciting stares. I dreamt of a world where people didn’t slowly back away from me in case I was contagious. 

I couldn’t digest food properly, so I took pills before I ate. Even with the help of pancreatic enzymes, I suffered from relentless stomachaches and had a hard time gaining weight. I wanted to walk down the hallway with my head held high as I visited the school nurse’s office to take my medication. Instead, I felt ashamed by my illness. 

But I still giggled when people told me to “lay off the cigarettes” or “go eat a hamburger.”

I didn’t want to be pitied, but the weight of CF was heavy.

[adolescence]

There’s something you should know.

I grieve the deaths of my friends.

But don’t feel sorry for me.

During my adolescent years, I lost many friends — people I’d met during my summers at a camp for children with CF. My first camp friend, Tiffany, died when I was a junior in high school. Losses accumulated throughout my time in college. I craved support as I processed my grief, but I didn’t want my loved ones to fear my death. 

I worried that talking about my friends’ deaths would somehow invite my own. I gave no physical indications that anything was amiss. But my mind was the battle ground where I wrestled with the fact that I, too, should die from CF one day. I protected everyone around me by grieving in private. Yet a part of me wanted to shout their deaths from a rooftop. 

I struggled with how future oriented college was — as though the future was an absolute certainty. But where in the curriculum did we discuss that life is guaranteed to no one? That things don’t always go according to plan?

I envied my peers and their blissful oblivion. Alone at night in my dorm room, I contemplated whether I was wasting what were potentially my final years on earth.

I wished everyone knew how precious life was. I may have been hyper aware of my mortality, but their time was ticking away, too.

Instead, I pretended to be carefree. 

I laughed when my friends celebrated that “our lives are just beginning” or joked that “we can sleep when we’re dead.” 

I didn’t want to be pitied, but I wanted everyone to realize life is temporary.

[young adulthood]

There’s something you should know.

I’m struggling with my health.

But don’t feel sorry for me.

Young adulthood came as a surprise. I didn’t expect to see a day when I worked full time and provided for myself. Somehow, despite the data, I was alive. From the outside looking in, it seemed the numbers didn’t apply to me.

But I felt like I was beginning to die. It was hard to remain hopeful as my lung capacity diminished. I spent many days bedridden from fatigue and pain, but I wore a smile to social gatherings. I was hospitalized for recurring lung infections that required intravenous antibiotics, but I assured everyone that this was normal for people with CF.

I wanted to protect my loved ones from prolonged anguish. CF-related health decline often occurs over many years, and it still felt early. I didn’t want anyone to overreact.

Yet a part of me wanted to alert the press that my mind and heart were both a mess.

Objectively, my longer-than-expected life was worthy of celebration. But it wasn’t as straightforward as it seemed. I couldn’t comprehend my own existence. 

I suffered from immense survivor guilt, as though there had to be a special reason I defied the odds when so many of my peers hadn’t been as fortunate. Why did I make the cut? The pressure intensified each day. I wondered how to spend yet another 24-hour bonus period.

People reassured me I was here to do something special. But I grew weary. My quality of life had worsened, and I was anxious about further deterioration. 

I politely chuckled when coworkers said, “I wish I could be your age again.” I began working remotely after my health made it too difficult to commute. When they asked, “Can your doctor write me a note, too?” I responded jokingly.

I didn’t want to be pitied, but it felt like the beginning of the end.

[now]

There’s something you should know.

I’m a widow. 

But don’t feel sorry for me. 

I didn’t expect to see my thirties, and I certainly never planned to be someone’s wife. But, after I met Ramón, I was confident he was my guy. He knew all my secrets and loved me just the same. Though I expected my death to “do us part,” Ramón was diagnosed with cancer and died a short time later due to treatment complications.

People grow uncomfortable when they learn I’m a widow. When the word leaves my mouth, faces change, conversations trail off, and rooms fall silent. Maybe it’s because I don’t fit the norm, and my widowhood serves as a painful reminder that it could happen to anyone.

I don’t want people to avoid me or feel uneasy in my presence. 

Yet a part of me wants to wear a sign that reads “WIDOW” — or, even better, “WIDOW WITH CYSTIC FIBROSIS.” 

How had I, the person who wasn’t supposed to be alive, outlived my husband?

Well, because life happens to everyone. Neither Ramón nor I died on time.  

I was widowed at 34 because I’d doubled my life expectancy. What a twisted blessing.

I never want my story to be a downer. I want it to inspire people to live life and embrace the only moment that’s guaranteed: right now. 

I yearn to put my hands on humanity’s shoulders, stare it directly in the eyes, and say, “The time is now. Start doing what you love. Own your story. Don’t water yourself down for anyone.” 

Instead, I let people be. 

I chuckle when friends confide “Ugh, my husband is getting on my last nerve.” I gently encourage my friends when they postpone their goals, awaiting a better time.

I don’t want to be pitied. I want to be the reason people squeeze every drop out of life.

[even more now]

There’s one more thing you should know. 

Despite it all, I find joy in every day.

Don’t feel sorry for me.

Even better, be happy for me.

I’ve discovered joy in uncertainty and beauty in every day.

Drew Dotson is an Atlanta-based author who uses her experience with cystic fibrosis, widowhood, and improv to inspire and uplift others. She writes regularly at www.drewdotson.com and is working on a memoir.