The Struggle of Feeling Defined By My Illness After Starting Out Healthy


“Who are you?” the caterpillar asked Alice in Wonderland. She gave her name, but that wasn’t what he meant, so he asked again. Faced with the same question, talking caterpillar or not, we all have to put some thought into an honest answer.

How do we define ourselves? By our looks? Our talents? Our passions? Our career? Our relationships? Our intellect? Our health? I suspect our definitions hinge on what we value most in ourselves and even others, and what we do or don’t have in terms of physical characteristics, talent, success, possessions, etc. However, I think unless you are on the extreme ends of it, health doesn’t even cross our minds. There are those who work hard to be very healthy, and as such health is often on their mind and therefore part of what defines them. On the other side of the spectrum are those who have bad health. Although poor health does worm its way into part of our personal definition, it is a factor it seems many people who struggle with their health attempt to avoid.

Some people were born with a debilitating disease and have never known otherwise. There are also those who started out healthy or unaware of illness, and were surprised with a complete change in lifestyle due to health problems, and I believe this is a different story.

Those of us who started healthy tend to be a stubborn lot that works hard to keep or get back to the life we once knew… and didn’t truly appreciate. I will also admit that we can be a proud bunch, keeping the gory details of our health struggles to ourselves. Even though those who love us would never think less of us knowing all the indignities we suffer. Loved ones really do want to know what is getting worse and what is getting better, and maybe, hopefully, there is something they can do to help. There usually isn’t much to do. Most people I know just keep hoping a magic wand will appear and all will be solved. This magical thinking isn’t because they are lazy, but because we all realize there really isn’t anything they can do to change the situation.

Still many of us keep our silence, especially if things are getting worse. Why? Yes, I freely admit some of it is pride. That paper-thin hospital gown is the least of my growing indignities. I have to share the nitty gritty details of my failing health with my doctors and most diagnostic tests have absolutely no room for vanity as I am poked and prodded in all sorts of places that can be out of bounds even after years of dating. I have to stand naked and let someone wrap recent surgical incisions with plastic and tape just to take a shower. I believe pushing all that aside and trying to act like everything is normal and trying to maintain what dignity is left is completely natural. However, I believe there is a deeper struggle determining the details we share with others: our identity.

I worked hard all my life for the successes I have enjoyed. My degrees, my world travel, my many adventures, my ambition and tenacity, even my piercings are the big things that I believe define my character. Those are the things I have accomplished. They demonstrate my character, my determination and even my struggles. The mistakes I have made identify who I am not. I’ve made my way in this world just like everyone else, laughed and cried with the best of them.

To then suddenly be defined by something that is happening to me is terrifying. My health controls my life and I resent that plenty. I don’t want it to be the first thing others think of when they see or discuss me. My health it is not who I am, it is something that is happening to me. Still, even I have trouble extricating my poor health from how I define myself. So I shouldn’t really blame others for doing the same. Of course, logic isn’t my strong point when it comes to my health. I’m like a 2-year-old — I want what I want regardless of whether it is reasonable or even possible.

It’s not possible? But I want it…

I feel like my life is split into two parts: before and after. Before my health failed, I was the girl who had accomplished more in 26 years than many people do in a lifetime. Of course, after it failed, I can only think I’m very lucky I lived hard and fast those years because now my body makes so many things impossible. Even though my health gets the first say in how I live my life, I refuse to let it define who I am. It may occupy my time and mind right now or even the rest of my life. That is OK.  I will find other avenues to continue to be successful in my ambitions, creative in my spare time, and dedicated to my loved ones. What about you?

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*


Find this story helpful? Share it with someone you care about.