For Patients

Transforming Your Illness Experience

If you are chronically ill, you can experience shock and trauma at the onset of your disease. You may also experience the rejection of others and the loss of yourself and the life you’ve known until now. You’re almost inevitably going to experience some disbelief, bias, and outright stigmatization from those you love, depend on, work with, and sometimes receive care from, such as your doctor or therapist. If you’ve been sick through your childhood, teen, or young-adult years, you’ve also suffered from never having had the chance to make an ordinary life at all. And, finally, your chronic illness has a severe impact and creates loss for those around you – your family members, your friends, your co-workers, your boss, and your health-care providers.

But this doesn’t have to be the whole story. You can help make your life better. By taking the different approach offered in The Four Phase Model, you can reduce your fear and pain, recreate a new self, and arrive at a life that gives you satisfaction and purpose.

The Four-Phase Approach

The four-phase approach presented here and in The Chronic Illness Workbook, gives you a way to rewrite the story of you and your illness. At the end of your narrative, you’ll be able to care about yourself and to live a meaningful, fulfilling life in safety and dignity. The four-phase method helps you move away from the shame, even self-loathing, that so often accompanies chronic illness. By following its strong, positive models and clear, sensible advice on how to deal with practical problems, this approach can help you escape from the exhausting effort of trying to pretend that you can still do everything you always used to – what’s called trying to “pass.” Instead you’ll construct a new life that takes into consideration the realities of your illness and its cycles of relapse and recovery. In the process of building a sustainable life, you also create new meaning for your existence. Once again, you’ll see yourself in a positive way. Ultimately, you’ll be able to integrate your illness experience into a complete and full new life. Even though your illness may take up a large part of your time and attention, it will not define your existence. It will simply be one of many aspects of your new self.

How The Four Phase Model Will Help You

Society doesn’t prepare anyone to cope with chronic illness. You didn’t get any information about it in high school or college health classes. Even the people who currently provide care for the chronically ill receive little training in the real experience of chronic illness. And this is true even though doctors are diagnosing chronic illness at a sharply increasing rate. In fact, the Journal of the American Medical Association stated in 1997, that nearly half of the population of the United States suffers from some form of chronic illness.¹

As one of the millions of Americans who suffers from chronic illness, you know that it can be a traumatizing, life-changing experience. Yet it seems that there are few tools to help you and your family deal with these new realities. Society appears to have only two approaches to illness: either people get better, with or without a doctor’s help, or they die.

If you have a chronic illness, you don’t fit either pattern. Instead you go through cycles of relapse and recovery. As the old joke says, “The good news is that you’re not going to die – and the bad news is that you’re not going to die.”

This book gives you a positive, realistic alternative to your existing choices. It defines four phases of change that can occur in everyone with a chronic illness. As you navigate through them, you create a narrative or story in which you proudly define your new self and your new life. For each phase the approach describes what you can expect from yourself, and from those immediately around you, in your workplace and from the society at large. It also gives you detailed methods to use for working successfully with your health-care providers.

By using the approach, and taking the recommended steps, you’ll be able to:

• Recognize the important physical and social differences between acute illness and chronic illness
• Recognize the basic realities of chronic illness, including trauma and cultural stigmatization
• Improve your day-to-day life as you cope with your chronic illness
• Learn specific strategies, skills, and coping tools for each phase of the chronic illness
• Involve your family and friends effectively so that they can help you progress through each phase of the four-phase process
• Develop an appropriate and more effective relationship with your health-care providers
• Integrate your illness experience into a meaningful new life rather than hopelessly pursue an unattainable cure

¹ Hoffman, C., D. Rice, and Sung Hy. 1997. Persons with chronic conditions: Their prevalence and costs. Journal of the American Medical Association 277(3): 375-376.
https://jamanetwork.com/journals/jama/article-abstract/410506

The Phase Journey Map

If you have had an opportunity to read through The Chronic Illness Workbook, on your own or with others, I suggest that you take a few minutes and examine the summary sections of each of the phase chapters. You can think of these summaries as a roadmap for your journey through the phases. Or you can think of them as operating instructions.

When people are introduced to the phases, they might place themselves further along the phase process than they actually are. That’s a normal, human tendency. We always want to be further along on any trip. It’s kind of an “are we there yet?” approach.

Regardless of where you place yourself in the phase process, it is worth reviewing or discussing the phases with fellow travelers, a trusted advisor, or counsellor.

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Respect Yourself, Respect Your Efforts

This journey isn’t easy and it’s not for the faint of heart. It takes tremendous courage to acknowledge your own suffering, to show genuine compassion for yourself, and to respect yourself for what you endured. As you’ve learned by now, not everyone in your pre-illness life will make the journey with you. At the same time, you encounter some very important new people – those who are sharing your journey because they are ill also, or people who like you for who you are and, therefore, want to share your journey.

No matter how you construct or conceive it, faith is essential to your trip. And the most essential pillar of that faith must be your faith in yourself. This faith will grow as you acquire the ability to see and understand your situation, as you learn how to cope with your particular needs and desires, as you discover the authentic person you are now, and as you learn to tolerate the chronic and the ambiguous. Faith may not come with flashes of lightning, huge breakthroughs, or amazing epiphanies. The real growth of faith usually happens like all growth in nature, slowly, over time. Real faith emerges gradually out of your many small, daily acts of courage when you stand with yourself.

If you feel shaky, remember that you’re not alone. Sooner or later, all of us will be on this journey just like you are. You already know people on the road who want to support you, just as you want to support them. Everyone needs to borrow the strength and faith of others at times, just as everyone shares faith and support when they’re feeling strong and confident. When you’re feeling unsure, remember to reorient yourself by looking at your phase roadmap. And remember, we’re on the road with you, sharing the journey.