How to Build Support for Someone Coping with a Chronic Illness

This is the introduction to the book, "Team Positive: How to Build Support for Someone Coping with a Chronic Illness," which addresses how to cope with a health condition and how those who love you can provide compassionate support during your quest. The primary objective of Team Positive is to help you—hero and caregiver—find new ways to work together as you navigate a life-changing diagnosis.

If you’re reading this book, my guess is that it’s because something catastrophic has just happened to you or somebody that you love, somebody in your family, your spouse, your brother or sister, your child. It might even be a close acquaintance or friend. Life as you knew it is no longer the same.

Perhaps there has been a serious diagnosis such as a chronic illness like Crohn’s, Alzheimer’s, or Parkinson’s; a chronic condition like fibromyalgia or dementia; or a life-threatening situation like cancer. All of these situations and the after-effects that will occur are both difficult to experience and address.

This book has been designed with these factors in mind. It has also been written because of a lack of resources designed to address how both the individual with a dire diagnosis and the caregivers should proceed in the face of such a challenge.

Team Positive is an educational and support program designed to give you and those involved the framework and tools to expand everyone’s capacities and perspectives. When used, these approaches have been found to ensure greater resilience during an incredibly challenging time. The main concepts you will learn about are the following:

• The Pyramid of Support: A basic understanding of the structure of support not only for the person with the illness but for the main caregivers as well.
• The Four Main Life Engagement Areas: A simple way to ensure a balanced approach to living while managing one’s physical, mental, and emotional energy.
• The Life Map: Designed to help identify personal barriers, your typical responses, and what truly matters in such a challenging situation to provide you with both direction and motivation.
• Coping Skills: I have included dozens of concepts, some brief and others more robust, that can help address various forms of distress and uncertainty.
• Communication Guidelines: Different considerations and explanations for how to engage with team members to increase compassionate support.

I’m a licensed mental health counselor with over twenty years of experience in the mental, educational, and behavioral health fields working to help individuals, couples, and families address chronic health, anxiety, and adjustment issues. This includes those dealing with anxiety and depression brought on by the unrelenting stress of such challenging situations.

I am adept in using Acceptance and Commitment Therapy (ACT), Solution-Focused Brief Therapy (SFBT), and Integral Psychotherapy (IP) approaches to increase client awareness and emotional flexibility. You can expect many of the tools and concepts commonly utilized within my practice to be found within the following pages.

More importantly, though, is that I’ve had to deal with this experience personally three times in my life. First was my own experience, as a sixth grader, in and out of the hospital for several years. Doctors were never quite sure what was causing my illness, but the diagnosis ranged from Crohn’s disease to simply being lactose intolerant. The second event was when my father was diagnosed with cancer, and the third was when my wife started to become extremely sick and lost a lot of weight, and we didn’t know why. It took the medical community three months to figure out it was Crohn’s.

In all of these cases, especially the latest two, we found ourselves wondering how to engage with such challenges. How do we bounce back? It was difficult to see a framework to help us through it all. The kicker for me was that these last two events happened back to back. Just as one situation stabilized with my father and came under control with promising results, the next case arose with my wife.

Fortunately for all of us involved in these scenarios, our belief system and outlook, professional experience, and, for the most recent two challenges, my training as a mental health counselor and patient educator provided us with the resources to develop a useful support system. This approach, though not fully recognized until after the experience with my father was completed, worked in supporting the hero—the person dealing directly with the challenge—and provided a support system for all those who were involved.

This initial group, the original Team Positive, also discovered a way to guide those outside the main support team who wanted to help, by coming up with rules of engagement and support systems and practices of their own. There are a lot of variables to consider in situations like these, and this book will walk you through the process of identifying and incorporating them into your support plan. It is also important to note that the original two heroes in this process, my father and wife, both contributed to the writing and editing of this book, adding more depth and consideration than I could do on my own.

We know illness is a tough time, and each person affected by the illness will react in entirely different ways given a variety of factors. This includes their circumstance, mindset, spiritual beliefs, and personality traits as well as socioeconomic status and access to quality care.

This book has been designed to help you gain a broader and deeper perspective of what has been found to work so that you can more easily build a support network of your own. My father and I explore and share with you the concepts and actions that helped us, our family, and those we worked with afterward move through such a challenge. This book includes evidence-based tools and techniques that are clear and easy to use and that I have found to be highly useful, both personally and professionally, as a clinician.

While there are some excellent resources out there, few address the process that a support group will go through or provide a list of useful strategies. There is also far too much information online that should best be labeled as “not useful”—in other words, these resources fall under the headings of “gloom and doom” and “horror stories.” Some of these resources can, in fact, be detrimental. Agreeing to a positive mindset and reliance on the team support system will help to buffer against these effects.

I liken this Team Positive process to that of a flock of geese flying off in a designated direction. When the point person becomes overwhelmed and tired, they then fall back into the V formation so that they can get inside the pocket, get away from the full brunt of the effort, and regain their strength while another takes the lead for a while. For my family and for many since then, this type of framework made it possible to move through such challenging times.

In some cases, the worst-case scenario did come to pass with the loved one dying. However, it has been others’ and my experience that when the concepts found within this book were practiced, the whole process was more validating and supportive, and the actions taken by all were meaningful. You can have this outcome too.

I invite you to continue. You are already in action. Get acquainted with the fundamental aspects of this approach. Dive into the basic nuts and bolts to see how this model would look and work for you. Pay attention to the sensations and emotions that drew you to this book in the first place, to how you feel as you turn the pages, and how you might anticipate this approach could alleviate some of the current suffering you are experiencing.

Recognize that one of the emotions you are feeling is hope. Hope is one of the greatest gifts that I, my family, and the medical and therapeutic community wish to offer you. If you have any questions at all as you read this book, please don’t hesitate to send me an email and I’ll get back to you as soon as I possibly can. I offer this because I know from my own experience how important it is to have a stable and robust network behind you.

My father was fortunate in that we were able to pull all these concepts together and that his medical community at MUSC Hollings Cancer Center in Charleston, South Carolina, was absolutely phenomenal. They were there every time we had a question. My wife also did well with this framework despite the slower process of diagnosis. Again, like my father, once she was at Brigham and Women’s Hospital, she too found a clinical program and support that was beyond belief. In both situations, the medical staff’s approach was open-minded and progressive, and they worked hard to respond quickly and compassionately, making the family feel like they were heard and understood.

You can have these outcomes, too, by assembling a fantastic network of folks all in the right places. The Team Positive approach works to ensure that you will be pulling from the best of all resources available. It is a model that my family and those I have worked with have benefited from multiple times to varying degrees.

Please know that my heart goes out to you heroes (let’s not call them patients) and your support network. Know that there are going to be times when you will be tried to your limits and pushed beyond your boundaries. But with some guidance (and a little luck), I think you will be able to take the actions needed to engage and feel stronger, confident that there is a process to help you through this medical journey, one small step at a time.

It’s all about being Team Positive.

To read more, purchase a copy of "Team Positive: How to Build Support for Someone Coping with a Chronic Illness" in paperback or Kindle edition on Amazon.