As someone who was born with a physical disability, who is now in my 40s, I have spent more than four decades living with a disability. I also work with clients who experience a variety of chronic health concerns and chronic illnesses. In today’s world, we hear a lot of sound bites related to wellness, well-being, and health, and many may not be helpful.
With all the noise, what does it actually mean to live well with a chronic illness? I can’t offer a definitive answer, as this is a subjective and personal question based on our individual goals, priorities, and values. Yet, I can provide some insights based on my personal and professional experiences.
In my new book, You Are More Than Your Body: 30+ Evidence-Based Strategies for Living Well With a Chronic Illness—By a Clinical Therapist Living With Cerebral Palsy, I offer my definition of living well, and a variety of coping skills that aim to increase acceptance, empower you to engage in values-based action, and enhance quality of life.
To me, living well includes spending time doing activities that are connected to my values, not struggling with or fighting against things that I cannot control or change in the moment, coming back to the present moment when I am caught up in unhelpful thoughts or future worries, slowing down, nurturing a sense of gratitude, and cultivating a balanced perspective that acknowledges the complexity of my experience.
Let me break down each of these components a bit more.
- Spending time doing activities that are connected to my values: It is easy to focus on the “have tos” of life, particularly when we are managing a chronic illness and have limited energy. We might ask ourselves, “What do I have to get done today?” versus “What is meaningful to me to focus on today?” Taking action that moves us in the direction of our values, or what we define as meaningful, enhances a sense of vitality and quality of life.
- Not struggling with or fighting against things that I cannot control or change in the moment: It is natural to fight against what is unpleasant and what we don’t like. However, doing so tends to just amplify our distress, because we become caught in an unwinnable tug-of-war. Accepting the present moment means allowing the moment to exist as it already is and not fighting it. It doesn’t mean you have to like it, or that you don’t take steps to change unhelpful behavior. Rather, you are freeing up energy, as you are not using energy fighting against reality, which allows you to engage in helpful and values-based behaviors.
- Coming back to the present moment when I am caught up in unhelpful thoughts or future worries: It can be helpful to deliberately and purposely think about the past or future so that you can learn from your behavior and plan for future events. Yet, it is problematic when your mind is thinking about the past or future in a nondeliberate and spinning manner, thinking about the same thing over and over without a helpful outcome. This type of mental spinning can lead to increased stress, exhaustion, irritability, anxiety, and depression. Practicing coming back to the present moment allows you to deliberately direct your attention to your experience in the present moment versus being stuck in your head.
- Slowing down: Many of us are “human doers,” constantly pushing to complete task after task. We struggle to slow down and rest, to feel OK with rest. We live in a society that values productivity and output, a society that tells us we are lazy if we slow down, and that lazy is a bad word. Humans are not robots; we all have finite amounts of energy, and slowing down allows us to refill our tanks so we can do the things that are meaningful to us.
- Nurturing a sense of gratitude: Practicing gratitude enables us to have a more balanced outlook and notice things we feel appreciative of. It is important not to use gratitude to minimize or push away your concerns and challenges. Nonetheless, gratitude may facilitate more joy, less stress in your daily life, and a greater sense of well-being. Fostering gratitude often begins with noticing moments of gratitude in daily life. Saying “Thank you” to someone, or having an internal feeling of joy or excitement, for example, can be signals of gratitude, that you are appreciative of someone or something.
- Cultivating a balanced perspective that acknowledges the complexity of my experience: It is natural to zoom in and only focus on certain aspects of your experience, particularly aspects that are unpleasant or that you feel frustrated or upset by. Yet, multiple things, even contradictory things, can occur at the same time. If you practice acknowledging all aspects of your experience, you can make a more intentional choice about how you want to act versus focusing on only one aspect of your experience and acting out of habit or comfort. One way to practice this is by using the word “and” instead of “but.” Intentionally using the word “and” allows for complexity and dichotomy in your experience. “And” acknowledges, includes, and expands what precedes it.
I hope these strategies, among others, can help you feel capable and empowered to live your life in a meaningful way, with or without chronic illness.