Here is my recent interview with Danea:
Toni: Tell us about when you became chronically ill and what your diagnosis is.
Danea: I was born with VACTERL Association, a constellation of birth disorders that impacts six systems in the body and causes closures at both ends of the digestive tract. I had ten surgeries before I was two years old to correct a variety of malformations. Those were followed with frequent doctors' appointments, hospitalizations, medications and alternative therapies.
During my teenage years, I endured chronic kidney infections related to renal complications of VACTERL. After a surgical correction, the infections were halted, but my kidney (I only have one) had severe scaring. Chronic kidney disease is a progressive condition, and after 16 years of very slow decline, I joined the kidney transplant list. We are currently finalizing living donor plans.
Related to VACTERL, I have also coped with impaired pulmonary function, infertility, pain and other health challenges.
Toni: I am overwhelmed by what you’ve been through since birth, Danea. My heart goes out to you and to your parents. Please share with us how you came to write Chronic Resilience.
Danea: I was very accepting of my body and illness when I was younger because I didn’t know any different. I grew up to believe that my diagnosis had a purpose in my life, and I yielded to its presence.
Conversely, as an adult, acceptance was harder because I had to give up things that I wanted: pregnancy, energy, guaranteed longevity. The tension between my reality and what I wanted my life to be was very stressful. I felt that I was at the mercy of my body. And I was throwing a huge pout-filled, pity-party to commemorate it.
As my kidney function declined, I realized that I needed a less stressful approach to my health. For that, I looked to my childhood. I wanted to relearn how to welcome my body, emotions and spirit into my experience, just as I had when I was young.
Out of that exploration I developed a tool kit that I use to cope with the ups and downs of managing a chronic illness. I wrote Chronic Resilience as a way to guide patients back to the basics. My hope is that other women can bypass my years of stressed-out trial and error and head straight for what works, no tension headaches necessary.
Toni: How do you define “chronic resilience”?
Danea: There is a collective belief in our society that a magic fix exists for almost anything that ails you. All you need to do is find it. This belief plays out in the way people bounce between diets, self-help books and medications. If something doesn’t work, we jump to the next “quick fix,” and the next, and the next, always looking for a final solution.
For many years, I searched through a myriad of personal development books and techniques for a way out of my health struggles. I thought that if I could meditate perfectly, heal past emotional wounds or say affirmations religiously than not only would I be healed, but I’d be wealthy too! Unfortunately, this is a myth. Stress, pain, and challenge are part of being human. Sometimes a quick fix, or any fix, doesn’t exist.
Chronic resilience is two things. First, it is the recognition that life is a rollercoaster filled with ups and downs. Second, it is a conviction that you have the strength and ability to take the ride. By coming to peace with your inherent humanity, the curves and dips in the roller coaster don’t come as such a shock. This allows you to remain centered no matter where the ride takes you.
Toni: I love your definition of chronic resilience. It’s very close to the Buddhist concept of equanimity that I often write about: recognizing that life has its ups and downs and learning to respond with an open mind and an open heart even during the toughest of those down times.
You write about the relationship between stress and illness. Can you talk about that a bit, including what you see as the best stress management tool?
Danea: Stress has a circular relationship with illness. The body’s stress response system suppresses the immune system, raises blood pressure, slows digestion and causes inflammation. Because of this, chronic stress can promote illness and impede healing. Once ill, symptoms, time commitments and loss of abilities are all stressful. Hence, stress can be both a catalyst and a byproduct of illness.
Stress management is a vital piece of any care plan. The one thing all types of stress have in common is a lost sense of control. Especially with illness, it can feel like your life, and your body, is no longer yours. Our initial reaction to illness is to place our focus on the very things that we don’t have control over: upcoming scan results, a medication's effectiveness, how long our pain will last. This only exacerbates stress.
The most powerful thing patients can do is make a list of what is within their control. And I can assure you there is a lot. You can control your diet, exercise regimen, taking your medications, allowing yourself to rest, finding doctors you trust and so much more.
Chronic Resilience is written as an ownership manual. Each chapter delves into something you do have control over. Once you see where your power lies, you can put together a game plan to better cope with the challenges you face.
Toni: In the book, you write: "True healing comes from finding the compassion to unconditionally welcome ourselves exactly as we are." What role does self-compassion play in managing a diagnosis?
Danea: Sometimes illness can make us feel guilty: We think that we are not doing enough to heal ourselves or that we are letting our loved ones down by having an illness. These thoughts create inner turmoil. Tension is created between who you are and who you feel you should be. Illness can be a catalyst to heal this internal tension.
Learning to be self-compassionate is a conscious choice to let go of the blame and shame that can accompany illness. Look at yourself as an empathetic friend would look at you. She wouldn’t make you feel flawed or responsible for your diagnosis. She would wrap you in her arms and tell you she is here for you. Self-compassion provides that support to you, from you, in the most intimate way.
Toni: Again, what you say resonates strongly with me, Danea. In fact, in my new book, I write about how a good way to check if you’re treating yourself kindly and with compassion is to think about whether you’d treat a loved one in that same way.
Your book highlights conversations you had with nine women who are coping with a variety of chronic illnesses such as cancer, diabetes, multiple sclerosis, rheumatoid arthritis. What did you learn about being a patient from these inspirational women?
Danea: Many, many amazing revelations and lessons came out of talking with these nine phenomenal women. They have accomplished some astounding things and have full, rich lives despite illness. There are two lessons that have really stuck with me.
The first is the power of connecting through shared experience. Illness can be very isolating. At times it feels as if no one gets it. The validation that comes from telling our stories is empowering like nothing else I’ve experienced. I purposefully made the book story-heavy, not only because there were so many great stories but because it is important to know that we are never alone in this. There are many women who have felt our same fears, frustrations and joys while navigating the journey of chronic illness.
These women also reminded me that I am a partner in my medical care. My voice is as important as my doctor’s voice. Patients are fundamentally at the center of their care. It is imperative to choose health practitioners we feel comfortable with and who understand our goals. We need to learn as much as we can about our diagnosis and treatment so that we can make informed decisions. And we should feel empowered to work with our doctors to adjust treatments, diet and our environment to find what works best with our lifestyle.
Speaking with these women was the most eye-opening part of putting this book together. I know you will glean a few cherished lessons of your own.
Toni: I have gleaned many cherished lessons of my own just from this interview, Danea. Thank you so much, and I wish you the best of luck with Chronic Resilience.
© 2013 Toni Bernhard
Chronic Resilience is available at Amazon and Barnes & Noble.
Danea was born with VACTERL Association, a rare birth disorder that caused malformations in six systems in her body and left her with chronic kidney disease, chronic restrictive lung disease and several other chronic conditions. Despite these health challenges she has become a certified life coach and a public speaker who has appeared on television and numerous health blogs. Visit her at www.chronicresilience.com
Toni is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregiversand How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at www.tonibernhard.com