Fear of recurrence as an illness

When diagnosed with a life-threatening disease, you have two choices: You can choose to fight, or you can choose to succumb to fear. Fighters challenge illness, embracing treatment and facing the obstacle of an uphill battle to better health. But as fighters become survivors, it’s not uncommon for them to glance in the rearview mirror out of fear that the disease might be creeping up on them.

Fear of recurrence of illness is a medical condition that is completely normal and expected. In cancer survivors, fear of recurrence has been shown to be a common concern.

For many people, that fear can be adaptive and help someone stay on top of their health; while for others, the fear can become intense and create anxiety and depression that may impact both their psychological and physical health. This can have a negative impact on physical recovery.

For many individuals with chronic illness, severe stress itself can exacerbate a flare up or recurrence of illness. Therefore, it is critical for individuals with any chronic medical condition to manage their fear and anxiety so it doesn’t contribute to the problem.

How do you manage the stress of fear of recurrence?

There are many strategies that can help people cope with understandable anxiety and fear of recurrence. First and foremost, not ‘beating yourself up’ for experiencing these fears is a good place to start. Having fear and anxiety is normal and part of being human. However, everyone reacts differently to these situations, and so there is no one-size-fits-all method for reducing worry.

For many people, talking about the fear and anxiety can be beneficial. This can include sharing concerns with a close friend, family member or pastoral support, or connecting with a support group of others who are going through the same medical experience. However, if the anxiety and worry interferes with daily activities, you may need to seek help from a professional, such as a psychologist or psychiatrist. These medical experts can teach specific techniques to reduce worry and fear, or in some cases, prescribe medications to reduce the worry.

Research has shown that journaling about difficult events can reduce associated worry and anxiety. This may be beneficial for people who don’t feel comfortable opening up to others but are still searching for a way to express their thoughts.

“Explore."

Reducing overall stress can also help diminish specific anxiety and worry. Practicing relaxation techniques, such as deep breathing or meditation, and maintaining healthy routines, including regular exercise, sleep and eating habits, can help.

The more informed someone is about the course and prognosis of a specific illness, the less anxious they tend to be. Find out as much information as possible about the diagnosis from a doctor and other qualified health providers.

Additionally, spending time with people and participating in healthy activities are critical to reducing fear and worry. Some people cope by finding ways to assist others, whether that is helping someone who is also experiencing the same illness or through volunteer work.

Giving back can make a difference in the way you look at your own circumstances, and reduce some of the focus on the ‘what ifs’.

What can family members do to help with their own fears of a loved one getting sick again?

Just like the individual experiencing the illness, family members can experience a range of emotional reactions and worries regarding the fear and uncertainty of a recurrence. It’s important for family members to recognize they may be taking on additional stressors if they are in a caregiver role. For example, a family member who has previously made changes in their work schedule to accommodate providing caregiving for an ill loved one may have specific fears about the impact of providing care again on the families’ finances.

Caregivers can feel guilty for having anxiety or anger about a recurrence, because they’re not the one who is sick. Instead, family members need to give themselves permission to have an emotional response to a potential recurrence and use strategies to cope. All of the strategies that are beneficial for an individual who is experiencing the illness can be beneficial for their families as well.

How can this fear differ between someone with a chronic disease getting worse (MS, diabetes, lupus, etc.) and someone who’s in remission for cancer?

Living with uncertainty is something that most cancer survivors will identify as one of the primary reasons for the fear of recurrence. In a similar way, chronic disease, such as MS or lupus, also brings with it a fear of exacerbation of symptoms. One of the primary differences is in chronic illness, because the disease is not considered gone. Rather, individuals are taught to manage the ups and downs of the disease; thus, there is an expectation that the symptoms can and will recur.

In cancer, however, there is the uncertainty of the cancer never returning combined with the possibility that it may occur. For individuals with cancer, certain events can also trigger these fears. For example, learning of someone else dying of cancer, or anniversary events related to the diagnosis, such as the date of the original diagnosis, can enhance fear of recurrence. The anxiety related to this, regardless of medical condition, can be approached in similar ways.

What can someone do before a test or doctor’s appointment to ease their anxiety/fear of bad news?

It’s important to go to tests and appointments with a balance of realism and optimism. Having a positive outlook will not necessarily change the medical reality but helps individuals feel that they can bounce back from hearing bad news. Feeling resilient and capable of coping with a recurrence can help reduce the negative emotions associated with a less-than-desired result. Additionally, bringing a list of questions and concerns to doctor’s appointments can be a great preparation strategy.

Under situations of high stress, many people have difficulty remembering what to ask at their appointments and then can become frustrated and more anxious when they feel that they didn’t get all of the information they needed. Being prepared and then becoming educated about next steps can help reduce the impact of bad news.

Visit our website to find out more about Baylor Scott & White’s behavioral and psychological health services

About the author

Dr. Ann Marie Warren
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Dr. Warren is a clinical psychologist at Baylor Dallas' Level 1 Trauma Center. She provides psychological intervention for patients who sustain severe injuries and is the principal investigator for research that focuses on how trauma impacts patients.

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Fear of recurrence as an illness