Redefining Ourselves After Chronic Illness

New Expressions of Who We Are

There comes a time after the diagnosis of a chronic illness that we face the reality that life has changed. For some it is more so than others. Some may find treatments that set them back on the same course, while for others life is irreversibly different. I am the latter. As recent as last evening, just 12 hours ago, I was on the phone with my mother complaining that I had been in a flare for two days,napping and resting. I said, “I hate resting, I am not a “rester.” Only to open a Chinese fortune cookie an hour later to read “Take a rest, you deserve it.” Yes, I have become a “rester.” Even my fortune tells me so.

As humans we define ourselves in many ways. One of the most notable ways is by what we DO. Our physical activities and how we spend our time. For example, I used to say I am a hiker, mountain biker, kayaker, an outside adventure enthusiast if you will. I was, and still am, proud of my trophy from my 5K runs. Every weekend was an opportunity to go and do, or stay home and get things done. Productive. A full day in the yard. I loved heading out after breakfast and putting in a full day of yard work. The worked body and exhaustion of the day felt so good and accomplished. The dirtier and more exhausted the better.

Just before my diagnosis in 2020, I already knew life had changed for me. The hike up Mohonk Mountain in New York told me so. It was undeniable. Not only did I suffer pain but my stamina was just not there. No amount of mental hype or motivation could push me. My body was telling me that indeed things had changed.

Fast forward 2+ years after diagnosis, treatments for RA, Fibromyalgia and Osteoarthritis I am very much aware how different my life has become. Because I am well versed in how important physical activity and exercise is for my illness, I continue to try to keep my body in motion to the extent it allows. But my hikes are flat, a have traded in my chunky mountain bike tires for a leisure road bike and my 5K’s are now paved walks and my yoga mat is my new friend. The last remaining vestiges of who I was is the boat in my yard and the wood shop in my basement. I won’t let go of those, yet. Each day, I move when and how I can.

Well, for someone who defined herself by her physical activities this has been hard to process. “Who am I?” became a running mantra in my head. Truth is we evolve and change as our life progresses. We morph and end chapters, open new ones, that is life, for all of us. But if I am not doing what I always did, who am I? I no longer knew how to answer that question. Panic set in as if not knowing who I am now means I am nobody. The hollow feeling that elicits is one of the scariest I have ever experienced. So naturally, the thinker, over thinker I am began to give that plenty of contemplation.

In doing so I realized, we are not what we do as much as who we are at our core. Our character, values, priorities. So the who I am would need to learn to do different things, and that is all. Can it really be that simple? So I am in the process of setting out to merely find new things to pour myself into. It is becoming OK to not be as physically productive as I once was. I can be productive and valuable in other ways. Walking one mile in pain, to move my joints and keep my muscles stretched and limber is just as much an accomplishment as the black diamond on the mountain bike trail I had conquered. Again, it leads me back to the same theme I have expressed in every article, mindset.

So we reinvent ourselves. I am still redefining myself. If someone were to ask, “so tell me a bit about yourself”, that description has changed. It has evolved, morphed. I am finding less rigorous, less taxing things to do and enjoy. I am a writer. I am beginning to enjoy reading, cooking….the possibilities are endless. And now that I write this I see how exciting that truly is. So many new things to explore!

We don’t have to be sad about the changes and the things we can no longer do. But we do have to be kind and compassionate with ourselves as we let go. Not of who we are, because that has not changed. We are letting go of what we used to do. And we are reinventing ourselves, finding new exciting things in our lives to dig ourselves into. New expressions of who we are. And that is all. It really is that simple.

With grit and grace,

Donna