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Ways to Cope When Living with a Chronic Illness or DisabilityBy forming a relationship with your disease it can become much more approachable.
Noelle Otto
You don't need to be frightened of your disease and in fact you can form an understandable relationship.
“ 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.”
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I have lived most of my life with a chronic autoimmune disease. I was a teenager when 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 14, 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. However, this relationship was perhaps my most intimate relationship because we share the same body. I figured out that I better become friends to the best of my ability with my disease and limitations 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 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—because that would be you beating yourself up—since you share the same body! 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 on 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.
Not in the ways that we would have wanted 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 a psychotherapist in private practice in Atlanta Georgia for over 30 years. She and her husband give weekend couple retreat workshops called Nurturing Your Love. She also facilitates many other kinds of trainings and workshops including Council of All Beings, Tribe Time, Marrying Yourself, Yoga and Movement Celebration to name a few. She is author of "Re-arranged, Never the same: The Nature of Grief and Toolbox of Hope, For When Your Body Doesn’t Feel Good." Visit Deva Joy at www.healingheartcommunications.com/.
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. However, this relationship was perhaps my most intimate relationship because we share the same body. I figured out that I better become friends to the best of my ability with my disease and limitations 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 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—because that would be you beating yourself up—since you share the same body! 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 on 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.
Not in the ways that we would have wanted 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 a psychotherapist in private practice in Atlanta Georgia for over 30 years. She and her husband give weekend couple retreat workshops called Nurturing Your Love. She also facilitates many other kinds of trainings and workshops including Council of All Beings, Tribe Time, Marrying Yourself, Yoga and Movement Celebration to name a few. She is author of "Re-arranged, Never the same: The Nature of Grief and Toolbox of Hope, For When Your Body Doesn’t Feel Good." Visit Deva Joy at www.healingheartcommunications.com/.
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