I’m pulling back the curtain on a chapter of my life that's been tucked away for too long. Back then, keeping things hidden away was my survival tactic—a shield against the perplexity of a condition so rare that even doctors were at a loss many times in how to treat me.

This rare photo of me from the pre-cell phone era was taken while I was working in downtown Boston. It’s a candid snapshot, and you can tell from the look on my face that I wasn’t exactly thrilled about having my picture taken. I still don’t!

It’s amusing to look at today because there I am, always with a box of tissues, a glass of water, and chapstick. Back then, I despised that I needed these at all times. If you come to my home, I have the same three things in practically every room (That’s a story for another day). But this photo also reminded me of a memory during my years of working in corporate.

It was around 1998 and I was living in Dallas and working for a large ad agency there where I was part of a great team working on their Harrah's account. One year, when the client proposed a trip to Las Vegas for the team as a gesture of appreciation, my initial excitement was quickly overshadowed by dread. How could I navigate the close quarters, the coughing fits, the spitting up of huge amounts of mucous, and then the need for my nebulizer and the loud compressor without revealing my secret? (If you’re wondering how I hid all this during the day, I will share at a later time.)

So, I did what I had to do—I spun a tale, and it was probably about rushing back to New Hampshire to help my parents. However, upon everyone's return, I learned that my Director was disappointed with me for not being a team player and joining in. Yet, deep down, my primary concern wasn't about professional accolades or not disappointing anyone but rather the imperative to keep my illness hidden. The weight of secrecy outweighed any professional standards I had for myself. Fabricating stories like this became second nature. It wasn’t easy, but it was necessary (at that time) to protect the part of me battling a progressive chronic illness.

I share this because it reminds me of my imbalance between secrecy and authenticity. The lengths I went to to shield myself took a toll—not just physically but mentally and emotionally as well. It was exhausting, and I paid the price in every aspect of my life, particularly in my relationships—with friends, family, and even with myself.

That's why I feel compelled to share my story openly today. I've come to realize that my experiences aren't unique. There are countless others like me grappling with similar challenges and looking at their conditions through a lens of shame. But it doesn't have to be that way.

By shedding light on my journey, I hope to break down the stigma surrounding progressive chronic pulmonary illness and encourage others to embrace their truth without fear or shame. We're not defined by our conditions but by the courage and resilience we show in facing them head-on, and living our lives openly like anybody else.