I have lived most of my life with a chronic autoimmune disease. I was a teenager when I was diagnosed with Rheumatoid Arthritis. My normal childhood was shattered with a sudden inability to walk or raise my arms to brush my hair and doctors used haunting words like “chronic” and “deterioration” that scared me. At the young age of fourteen, I knew my life would never be the same.
It came to me after a short time of living with this crippling disease that I have a relationship with this illness, just like I have relationships with everything else in my life. But this relationship was perhaps my most intimate relationship because we share the same body. I figured out that I better become friends with my disease to the best of my ability, because we probably have a long life together.
The first thing I knew to do, as a teenager, was to name it. I was used to naming things, including all of my stuffed animals and my family’s car. I knew that everything felt friendlier and less scary when it had a name. Naming my disease was a bridge to it, helping me believe that I could find a way of living with it with more acceptance and compassion.
I call it “Arthur.” What would you name your illness? You can start by writing down some options and see which one stands out. Although some negative names may pop out like “Stupid” or “B.S.” it might serve you well to pick a name that doesn’t make you contract every time you use it. The point is to bridge with your illness or disability, not to beat your illness up with a mean name. I don’t love — or even like — the name “Arthur,” but I don’t hate it.
When I say to someone, “I live with Arthur,” I experience a positive deepening in my relationship with myself. I am “owning” what is going on in my body in a way that enhances my self-confidence. I am including my illness as part of my life journey rather than framing it as a problem and obstacle, although it is that too.
In living with Arthur for so long, I have learned to refine my ability to listen to my body and what it is trying to tell me when I have flare-ups. Sometimes it is telling me that I am eating the wrong things, or not sleeping enough, or pushing and stressing too much and need more relaxation time. Sometimes it tells me when I am going in the wrong direction with something in my life.
There is no doubt that illness will alert us with limitations and tells us when to turn it around. I like to think of myself as playing “detective” on my illness. What is it doing today? What makes it feel worse and what makes it feel better? What are ways I can soothe it? I keep a “detective” journal on my discoveries.
I write Arthur letters and I invite Arthur to write me back. It may seem silly to you, but try it. Write your illness or disability a letter, and then see what it says back to you. Don’t think too hard about it, just write and see what comes out on the page. There are a lot of obstacles and challenges that come with living with illness. I make sure that I give myself permission to have “poopy time” with a friend or family member.
This is my time to really dump out all of my yucky, bad feelings, grief and anger about having to share my body with “Arthur.” I moan and groan and even exaggerate how bad it is. My listener moans and groans with me and empathizes and says the magic two words that I need to hear again and again: “It sucks!” Five minutes of “sulking time” helps a lot.
Part of playing detective to “Arthur” is also discovering and claiming what it teaches me. I call it “The Teachings of Arthur.” One of the first teachings I became aware of was that it mattered what I focused on. If I focused on what I could move instead of what I couldn’t, I felt better. Sometimes I could only move my pinky, but as I stared at my pinky and moved it all around, my heart lifted.
Another teaching was to bring tenderness and gentleness to the parts of my body that hurt and felt weak and limited. The image of being a lioness licking my wounds came to me and that is exactly what I do.
There is much more to having a chronic illness than learning all the medical stuff to do about it. Of course, that’s essential and foundational in one’s relationship with living with an illness. But it’s just the start. Try claiming your disease or disability as part of your journey and growth.
Instead of it being in the way, it is The Way. It is what has been put in your life’s journey to help you to know courage, to persevere, to be determined, to learn surrender and listening, and to be victorious in every success that you have. Your illness or disability has made you a warrior.
It may not be how we want, but there is no doubt that having a disease as a lifetime companion makes us resilient. It is a gateway to accessing strength and a sense of identity that is deeper than our bodies. Our spirits, the essence within us, is deeper than these vessels we call our bodies. When we live with illness, we have the opportunity to reach deeper into our spirits – to love and sometimes even shine.
Deva Joy Gouss, LCSW, is an experiential psychotherapist in Atlanta for thirty-three years. Working within group, couple and individual settings, she also integrates energy medicine, polarity touch, yoga, trauma resiliency therapy and the power of ritual. For over two decades, she gives monthly workshops from Marrying Yourself to Nourishing Your Love for Couples. She is author of Toolbox of Hope: For When Your Body Doesn’t Feel Good and Rearranged, Never the Same: The Nature of Grief.