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Adapting to Life with
Carcinoid Syndrome

Carcinoid syndrome not only affects your body; it may also impact your self-image and well-being. Perhaps the most important action you can take is to acknowledge the impact that your condition has on your life. Once you accept that your life has been changed by carcinoid tumors and carcinoid syndrome, you are in the best possible position to take action to make life better.

This page highlights the emotional impact of living with a chronic disease, and suggests how you can adapt to living with carcinoid syndrome. Topics covered include:

Responding to the Diagnosis

Being diagnosed with carcinoid syndrome can be a life-changing event. For many people, the diagnosis actually comes as a relief; you've already been dealing with the symptoms, but now your doctor knows what's causing them. But not everyone responds this way, and even the most optimistic first reaction is often mixed with other, less pleasant feelings. Your response to the diagnosis of carcinoid syndrome may go on well beyond the day your doctor first broke the news. It's a process that continues and changes every day, on good days and not-so-good days. One of the best ways to avoid bad days is to keep an eye on how your feelings and responses change over time.

In general, people who have been diagnosed with a chronic illness may respond in one of three ways: resignation, denial, and adaptation.

Resignation. Resigning yourself to having an illness is a way of giving up control. Resignation differs in important ways from acceptance, because resignation is based on feelings of helplessness. When you become resigned to having carcinoid syndrome, it diminishes your ability to take an active role in managing your condition. Even if you follow your treatment plan, monitor your illness, and experience an improvement in your quality of life, the attitude of resignation may diminish your enjoyment of these achievements. It's normal to feel a certain amount of helplessness when we're confronted by difficult facts. By acknowledging these feelings, and understanding that they're natural, you can lessen your tendency toward resignation, and move toward true acceptance.

Denial. Some people react to illness by refusing to acknowledge that anything is wrong. Or, a more subtle kind of denial is to separate feelings from facts; while admitting that living with carcinoid syndrome is unpleasant, you may still not fully acknowledge your feelings about it. The problem with this approach is that, even when you are not aware of them, the feelings are there anyway. And it takes a lot of emotional work to prevent yourself from experiencing them. Denial is usually based more on fear, shame, or anger than helplessness. These are emotions that can be especially difficult or feel inappropriate to express. This is where connecting with others who have carcinoid syndrome, or another chronic illness, can be of immense value. These feelings are natural, and they will never go away completely. But by expressing them in a supportive environment, you may gain energy, humor, and a sense of peace. Even if you don't have access to a support group, simply recognizing that it is normal to have unpleasant feelings can help make you feel better.

Adaptation. As you are able to recognize and deal with your natural tendencies toward resignation and denial, you move toward a healthier emotional state. Instead of "surrendering" to your disease, you take an active role in managing your condition. It doesn't mean you don't still have bad days; but you might be a lot less likely to have bad weeks. Adaptation is a process. It's the emotional work needed to face difficult facts, create new options, and learn new skills. Adaptation takes work, and it's not a permanent state; you have to continue working each day to face the emotional consequences of having a chronic illness. The reward is a sense of living more fully, and the possibility that, by taking charge of your emotional life, you may have more energy to do the things that may help improve your symptoms and prognosis.

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Dealing with Setbacks

In your journey toward adaptation, there will be good days in which you live in the moment, never once reverting to nostalgia for the times before your illness. Inevitably, there will be setbacks as well. Some setbacks are physical; others are emotional. What's important is how you deal with them when they happen.

A productive use of emotional setbacks is to reflect on any unresolved feelings or painful memories with a positive mindset—you can tell yourself that you have been through a lot, and you will get through this. You may want to take these opportunities to express your thoughts to your doctors or loved ones. Or, you may find keeping a journal is more your style. Eventually, as you adapt to life with carcinoid syndrome, you will probably learn to anticipate triggers for feelings of discouragement, such as anniversaries, holidays, or medical appointments.

Another way to keep positive is to set small, realistic goals for yourself. Try to be honest and keep in tune with your own body. Try not to compare yourself with others, or to pre-diagnose yourself. You may want to focus on developing the parts of your identity that have nothing to do with your illness—your imagination, your dreams, your creativity. Yes, you may have to adjust your path or ask for help along the way, but remember: Allowing others into your life to help is not a sign of failure.

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Giving Back

As a person living with a chronic illness, your experience gives you a unique ability to give back to others. To people newly diagnosed with carcinoid syndrome or another chronic illness, you can offer understanding. To those who are healthy but fear that they may one day have a chronic condition, you can be an example. To those who love and care for you, your ability to adapt to illness offers inspiration.

Consider your perspective on life. There's no "right" philosophy; you are the only one who knows what this experience means to you. Whether you believe you have learned something about yourself or not, you can use these experiences to help people understand what chronic illness might be like for them.

Specifically, you might consider volunteer work as a way to connect to other people living with carcinoid syndrome. Along the way, these connections may help you to realize your own strengths.

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Learn more about taking an active role in managing carcinoid syndrome