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Woman standing in the shadow of an oversized oxygen tank.

The Person Behind the Illness

I’m sure we have all seen the saying, “I have COPD, COPD does not have me.” Another common one is, “I am not defined by my illness.” I think about these statements quite often. I wonder what other people see when they look at me whether strangers or family.

When I am in a store, more often than not I am on a mobility scooter. I wear oxygen unless I am relaxing at home. My family makes allowances for me at social events. The parking space next to the door is left available. They come to talk to me rather than me having to make the rounds to talk to everyone. I appreciate and am very grateful for all this. Do they see the same person they did ten or twenty years ago? Do they see behind the illness?

What I can change

When we have a chronic illness like COPD, it takes a lot out of us, physically and emotionally. We spend so much time managing it, talking about it, living with it, that we can easily disappear into it and become self-absorbed. It took a couple of years of this disease invading every aspect of my life that I started questioning who I was. I cannot take away the fact I have a serious illness. When a stranger looks at my face, I cannot change that they might focus on an oxygen cannula. I also cannot change when I am in public I will have to stop often to catch my breath. What I can change is how I perceive myself.

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Who I am

Mystery and family

I have owned a successful real estate appraisal business. The traits I needed for that profession are still with me. I love details and I love to research. There is nothing more gratifying to me than unraveling a mystery. I used to collect cookbooks, the older the better. I raised a child. He is now married to a beautiful and loving woman and together, they are raising two of their own children.

Travel, books, and music

I want to travel around America by back roads only, exploring life in out-of-the-way places. Highways terrify me and I will drive miles out of my way to avoid them. Books are my biggest passion and I can spend an entire day browsing the shelves of bookstores and libraries. My taste in music is eclectic, from the old standards, classic rock, and country, to Celtic and blues. I exercise with Native American drum music and also meditate to it. I believe in spirit animal guides and collect crystals for their metaphysical qualities.

Conversations and the quirky side

Long conversations with close friends are important to me and we discuss pretty much anything. Solitude is also a need of mine, as long as it’s not too long. I believe in kindness, being polite, manners mattering, and I love the quirky side of people. We all have unusual traits that should be celebrated. I can be moody and teary-eyed and I’ve been told, sometimes stubborn. Procrastination enters my days more than it should and computer games are a weakness I try to avoid.

Who are you?

Think back on your life and all that you accomplished, the jobs you did, the passions and hobbies that excited you. Remember who you are. Behind the person stopping to catch their breath, you are still there. Try not to look back with sadness because you can no longer do some of the activities you used to. Look back to remind yourself of the person inside, then look forward with determination and excitement to find something new.

I would love to hear from you. Who is the person behind the illness? Let’s share with each other.

Editor's Note: We are heartbroken to share that Carol passed away in February of 2022. Carol's storytelling and advocacy will be deeply missed, but her legacy lives on through her articles and in all the people she inspired.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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