Searching For the New You: The Four Phases of Change By Patricia A. Fennell, MSW, CSW-R As a society, we tend to look at illness in an on-off way. Either you’re sick or you’re well. And if you’re sick, you have a distinct illness. This way of looking at illness — seeing it in an acute framework — is rarely totally effective in the treatment of a chronic illness like fibromyalgia because fibromyalgia patients cycle repeatedly through relapses and remissions. When you experience yet another cycle, everyone — you, your friends, family members and health care providers — can feel as if they're failing. Understandably, as a patient you try to be who you were before the onset of your illness, but you can't be. You don't have an acute illness that can be cured; you can't be returned to your pre-illness state. The Four-Phase view looks at your situation differently. Our research has confirmed that four phases of adaptation occur in chronic illness and patients must navigate through these four phases on their way to defining a new self and a new life. The Four-Phase Model provides a framework for understanding this critical process. The goal is not cure, but integration. Fibromyalgia (FM) patients are individuals and are not all the same. In addition, your physical, emotional and social needs in the early phases of FM may be considerably different from those you’ll have after you’ve been ill for several years. Some interventions won't work in earlier phases — you’re more likely to be able to do the things that your health care provider recommends if you understand what phase you’re in and what your needs are at that phase. The phases were identified from experiences of real people just like you. One of the best ways to get an overall picture of the Four Phase Model is to examine it in light of your own experience. As you read the allowing descriptions, you may recognize your-self as being in any one of the phases, but most people find themselves in Phase 1 or Phase 2 initially. Each phase is distinguished by its physical, psychological and social characteristics. Crisis In Phase 1, you may find yourself increasingly distracted by a number of physical symptoms that are beginning to interfere with your life. You might encounter increasing pain or constant fatigue. Nonetheless, you push through your symptoms, trying to continue your regular activities. This is the coping stage of Phase 1. Many people with chronic conditions are able to cope for a long period of time. Eventually, the symptoms become so bad that you can’t ignore them, and now you enter the onset stage of Phase 1. This could be triggered by a flu or an auto accident; but however it begins, you feel worse than before and are able to do less and less. If you have been sick, your doctor may think stress is keeping you from a full recovery. He might believe you are depressed and encourage you to get more sleep, cut back at work or join an exercise class. You may try to follow these suggestions, but your symptoms worsen until you enter the acute emergency stage of Phase 1. When you go back to your doctor, you’re re-examined and tested at length, but it could be quite some time before you’re given a diagnosis. When there are few answers, it is common for people to use denial as a way to manage the long coping, onset and acute emergency stages of Phase 1. As your physical condition continues to deteriorate, your private emotions may start to break through in public. You might burst into tears at a staff meeting or break down in frustration in the grocery store because you simply can’t recognize the canned goods you usually purchase. This kind of experience is typical in the crisis phase and the loss of psychological self-control can cause shame and self-reproach. Understandably, as a patient you try to be who you were before the onset of your illness, but you can't be In the crisis phase, it is common to feel increased fear and despair. You might wonder if you are actually dying or losing your mind. You know you feel terrible and you know you are getting worse, but maybe something is also wrong with your mind. Remember that at this point no one has labeled your situation. No one really knows what is going on and you are probably receiving conflicting advice from family, friends and doctors. It is not unusual to feel increasingly isolated and fearful of what other people are thinking about you. You may find it hard to talk to the people you have always been closest to because they are having difficulty understanding what you are going through. Depending on the severity of your situation, your losses can be considerable. These experiences are potentially traumatic. The people in your life may respond in a variety of ways to your experiences during Phase 1. Your illness probably has produced dramatic changes in their lives too, and they may feel shock, disbelief, or even annoyance in response to some of your physical symptoms and emotional changes. The degree to which a family copes with the crisis phase depends on the individual family, and how strong it was before the crisis struck. In the crisis phase, people begin to queue up along a continuum that extends from support to suspicion that you are malingering. Any negative responses can hurt you all over again, causing a kind of secondary trauma. Stabilization During Phase 2, you begin to create order out of chaos. Though your symptoms do not disappear, they may reach a plateau. You may begin to recognize a pattern to your physical condition and this helps to orient you. For example, you may notice that if you climb a set of stairs in the morning, you may not be able to do it again until later in the day. If you drive for more than 10 or 15 minutes, maybe you become fatigued or confused about how to get where you’re going. Whatever the actual events, you begin to discover your new parameters. During Phase 2 you might experience a relapse to the crisis phase as the result of a bad flu or because you have tried too hard to return to the full activities of your pre-crisis life. Eventually, most people’s symptoms begin to stabilize. By Phase 2, most people have received a FM diagnosis. At first this may give you an enormous sense of relief because it explains your pain, fatigue and confusion. However, you quickly learn that a diagnosis of FM does not explain how the illness started or what’s going to happen to you in the future. So ambiguity returns. Your doctors may have difficulty halting symptoms or developing a cure. No one seems willing or able to tell you how to live under these new conditions. By now, you have most likely experienced reactions from others of disbelief, rejection and stigmatization. Some negative comments may even have come from your health care professionals. As a result, you become very cautious about what you say and to whom. You may begin to try to “pass” for well. You pretend you are your “old self” even though you are suffering. The pressure to “get better” or “be normal” can be extremely painful. Many people simply do not understand what you’re going through and some might even blame you for your condition. As a result, you may find yourself withdrawing from the people with whom you’ve always associated. In their place, you may seek out people more like you, people with FM or other chronic illnesses; people who under-stand your situation. You begin to educate yourself about your illness and seek other sources of emotional support to make up for the losses you have suffered. You may go through a period of “doctor hopping,” hoping to find a better treatment or a cure. Although this normal behavior may be upsetting to your primary care physician, your search for health care professionals who may be able to help you shows that you are beginning to feel as if you can assert some control over your life. Boundary and role confusion is also normal in Phase 2. You probably do not know the dimensions of your physical limitations. You and those around you are anxious for you to return to your pre-crisis self and resume your former roles and schedules. Unfortunately, you quickly find out that if you attempt to do this you begin to encounter serious problems. You may feel like a small child just beginning to learn how to negotiate the world again. Few things about your body, emotions or mind act the way they had, but you may keep trying to behave like the person you used to be. Despite your best efforts, you may fail repeatedly at what you attempt. As time goes on, you tend to feel more and more guilty and ashamed. As you go through the cycles of physical relapse and remission, the people in your life experience them as well. They can become as exhausted by the process as you do. They can become traumatized, just as you may have. Typically Phase 2 results in increased conflicts with family, friends, co-workers and some care providers as they lose patience with your inability to “get back to normal.” The persistence of your illness frustrates everyone. If you’re in a relationship, it is not unusual for your partner to begin thinking that you’re not the person you were and that this isn’t the life they signed up for. Without informed guidance, many FM sufferers can get caught in a repeating loop between Phase 1 and Phase 2. Each new crisis produces pain and secondary wounding. A lucky few manage to arrive at a plateau of manageable symptoms, but the next crisis can send your whole system into chaos again. Resolution In Phase 3, you may enjoy long periods of stabilized symptoms — even improvement — but you may also have relapses. As you come to understand that your condition is chronic and that you cannot go back to your pre-crisis life, you experience a true and deep grief reaction and must begin the active process of grieving the loss of your former self. You come to wrestle with the reality that you “can’t go home again.” You may find yourself wondering, “Who am I now?”, “What good am I?” or “Why did this happen to me?” If you’re like most people, you will need support during this difficult time. A counselor, friends and clergy people can all help you learn not to reject your new suffering self, but to have compassion instead. This is a painful but necessary period in which you struggle to find meaning in what has happened to you, and you discover what you can be in the future. Like many people, you may do this through creative acts like writing in a journal or taking up painting. You might look to a variety of sources for inspiration and wisdom, including spiritual traditions or the stories written by other people with chronic illnesses. Slowly you begin to rewrite your own story in a positive way, finding meaning in your experience. You begin to see that you have a future and as you re-create yourself, you learn to respect the person you are right now. In Phase 3, you begin to let go of your search for a cure and instead start to build a new life that makes room for your illness. As you begin developing your new identity, it may now become important for you to challenge the stigma you may have been experiencing. For some individuals this might mean speaking out from the podium, or confronting a boss or a spouse. For others, it means just refusing to pretend or keep silent about their FM. Instead they “stand with them-selves” bravely, day by day. At this stage, you may find yourself in different kinds of relationships, or behaving differently in the ones you have. You may change to working part-time, or you may go on disability. Phase 3 is often the time when some people permanently separate from the chronically ill. As one patient put it, “This is where your friends and family members — not to mention your clinicians — ‘fish or cut bait.’” However, this is also a time when you may be able to reintegrate people who left during earlier phases. Some of them have learned more about the illness and themselves, and are ready for a different kind of relationship. Integration In Phase 4 — as in Phase 3 — your physical symptoms may continue to improve, or you may relapse. By now you recognize the cyclic nature of your FM and no longer see relapse as a failure. Instead, you understand that it is another cycle that you must once again integrate. You now realize that integrating FM into your life is what constitutes your recovery. Psychologically you have united the salvageable aspects of your pre-crisis self with your newly claimed and respected self. You maintain this achievement through a constant commitment to allow your suffering, to meet it with compassion and to treat it with respect. This does not mean that life has become easy for you. Sometimes you may not be able to climb stairs; other times you may be so debilitated that you must use a wheelchair. You may still become mentally confused, especially if you do too much. Now you know that your daily life must include small acts of bravery in the face of stigmatization, rejection and even your own pain. But you stand with yourself. You have created a new “personal best,” a new ideal self to maintain. You continue to nurture the new friendships you began establishing in Phase 3. You may have also managed to reintegrate a few of your formerly alienated family and friends. Your newfound frankness and openness about your FM make it perfectly clear to people who you are now and some will admire you for it. Many people change their careers at the end of Phase 3 or during Phase 4. Because you now want to make your life as meaningful as possible, you may no longer be satisfied with just earning a living. You may want to work at something you believe has value and importance or you may decide to use your limited energy to participate more actively in society by volunteering your services for a cause that you support. Whatever your ultimate goals and individual experiences, the Four-Phase approach gives you a way to rewrite the story of your life and your illness. It helps you move away from the shame — even self-loathing — that so often accompanies the chronic illness experience. You can use this approach to help you escape from the exhausting effort of trying to pretend that you still can do everything you used to. Instead, you can 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 will also create new meaning for your existence that allows you to see yourself once again in a positive way. Ultimately, you can integrate your FM experience into a complete and full new life. Even though FM may take up a large part of your time and attention, it does not have to define your existence. It can simply be one of the many aspects of your new self.