Health and wellness doesn’t just have to do with how you feel physically, but how you feel mentally, too. Living with CF, however, can be extremely challenging both physically and emotionally. The rigorous physical CF treatment regimens make it hard for people with CF and their families to give equal attention to all aspects of their lives. Simple things like good communication, stress management, organizational skills and support systems can make a big difference in improving your overall health.

Research has shown that people with CF and their families have increased rates of anxiety and depression compared to the general population. People experiencing anxiety and depression have poorer adherence to therapies and more health problems. Discussing any mental health issues with your care team is the first step in finding solutions.

What is Stress?

Stress, our physical and emotional response to external stimuli, is part of everyday life. Although stress is usually thought of as a negative response, we actually need a certain amount of it to function properly. This kind of positive stress, for example a “flight or fight” response, is referred to as eustress or “good stress,” because it motivates us to respond quickly to dangerous or demanding situations. Although this is an extreme example, eustress motivates us to complete tasks like going to work, doing schoolwork and taking care of ourselves. Eustress also relates to our feelings of anticipation, excitement and the adrenaline rush that causes a natural high. Without a little stress in our lives we wouldn’t be motivated to do much of anything! Conversely, too much negative stress, or distress, can actually be detrimental to our health.

Ways to Manage Your Stress

Fitting CF therapy and nutrition regimens into your daily schedule can become stressful, and it is important to develop ways to deal with this anxiety. In theory, managing stress means controlling your response to a situation or controlling the external stimulus. Remember, when you feel stressed out, you always have some control. For instance, you may feel that you have no control over the fact that you need treatments. But the fact is, you are in control of how and when treatments are administered.

Avoid and Prevent Stress

By changing areas in your life that cause you the most stress, you will be able to attain a much more rewarding lifestyle. For instance, if incorporating healthy nutrition habits into your day seems difficult, schedule your meals and snacks, and then shop for the entire week in one afternoon. This will make you feel more in control of your time and ensure that your nutritional goals are met, too. Also, activities that make you feel calm and happy can counter stressful feelings. Hobbies such as writing, drawing, or reading relax the mind. People who exercise and play sports regularly generally feel better about themselves, have more energy, and sleep better. Finding people to talk to, such as family, friends, other people with CF, or a professional counselor, can help you sort out your feelings. Remember, when you can’t avoid stress, it’s better to deal with it than to let it get you down.

Routines

Get Organized

Being organized, both as an individual and as part of a family, is a great way to avoid unnecessary stress and make stress more manageable. Some people are naturally very organized, but a lot of us are unorganized to varying degrees. Below is an exercise that can help you organize your life.

Break it Down

One way to organize your life is to break down the whole into its individual parts. Take a piece of paper or use a computer and break down your life into categories, such as:

• Family
• Health
• Hobbies
• Money
• Relationships
• Social Life
• Work

Your list may be long or short, but one thing that should be on it is your health.

Get Your Priorities Straight

Your life needs to be organized and ranked based on what is important to you. If work is the only means of supporting yourself but you hate your job, then maybe it shouldn’t be your top priority. Changing a job may be difficult, but it’s usually easier than changing your friends or family.

If You Don’t Have Your Health…

Where did you rank health? When people go through this exercise, very rarely does health come out on top. But if you are not healthy, it’s very difficult to have anything else on the list. This is true for people with CF, particularly adolescents, who are having difficulty fitting their treatment regimen into their lives. You and your family should make CF management a high priority, if not the highest priority. That doesn’t mean you shouldn’t have a life outside of managing your CF. You should strive for the fullest life you can, but having the time and energy for that means you need to be healthy.

Emotional support

Support Systems

One of the keys to emotional health is a good support system. Most of us are born with a support system—our families. As we get older, the system expands to include friends and colleagues. Amazingly this process happens with little attention from us. But we would certainly take notice if the people who make up our support systems suddenly disappeared.

What is a support system?

A support system is a network of people who provide an individual with practical or emotional support. In real life, your support system is the people you connect with. Your CF care team is part of your support system, too. Some connections may be stronger than others, but they are all important.

One of the challenges for people with CF is the necessity of infection control, which makes CF a very isolating disease. Connecting with other people and families with CF through social media and virtual events are ways to connect with others experiencing CF.

Why is a strong support system important?

Most human beings like interacting with other human beings. Going through life alone is difficult. Support systems are also important in managing stress, which is important to physical, as well as emotional, health. Individuals and families living with CF experience many stressful situations. A strong support system is helpful in maintaining a sense of normalcy, which helps lower stress levels. Also, a strong support system can help people with CF feel connected, even when they’re isolated because of infection control issues. The professionals at your CF center are also a good source of support.

The Facts on Depression

It is normal to feel sad sometimes. According to the American Psychiatric Association, one in 10 Americans suffer from depression each year. Unfortunately, many people go undiagnosed and untreated because they didn’t know that they were depressed or they were afraid of being labeled mentally ill. Having a chronic illness like CF puts one at higher risk for becoming depressed. Depression can interfere with your ability to keep up with your CF treatment regimen, so it’s important to get help. It is possible to experience symptoms of depression without being diagnosed as clinically depressed, but you should let a professional make that

Symptoms

You should talk with your doctor or social worker at your CF center if you experience one or more of the following symptoms for 2 weeks or more:

• Feelings of sadness or hopelessness, or anger and irritability.
• Difficulty sleeping or sleeping more than usual.
• Loss of interest in activities.
• Changes in appetite with either significant weight loss or weight gain.
• Loss of energy for no reason.
• Difficulty concentrating.
• Frequent thoughts of death or suicide.

These symptoms are some of the general symptoms used to diagnose depression. They are NOT meant to be a way for you to diagnose yourself or someone else with depression. These symptoms should help you to determine whether you or someone you know need further evaluation by a professional to determine whether treatment for depression is necessary. Additionally, the CF Foundation recommends annual screening for depression and anxiety.

For more information, check out the American Psychiatric Association’s website.

Every day we deal with a range of emotions. But if you or a loved one has CF, you may experience more ups and downs than the average person. Having good ways to cope are essential for your emotional health. Recognize that everyone deals with things differently—what works for you may not work for your spouse or your children. An extroverted person is likely to have a very proactive way of coping, while a more introverted person is more likely to sit back and think things over.

Coping as an individual or as a loved one of a person with CF is quite different. Being respectful of the way you and other family members cope, communicating problems and being supportive helps reduce stress, especially in times of crisis. When you find something that works, identify it as a coping mechanism. Here are some tips.

Get More Information

Educating yourself and/or your family can help restore a sense of control. Seeking information can help distill fear from the unknown or from what we think we know. But for some people, too much information may cause more anxiety. They would rather receive information on a need-to-know basis.

When seeking information about CF, consider your source. This website is a good place to start, but there is a lot of information about CF on the Internet that is dated or incorrect. The best place to get information about CF is from your CF center. Staff there can provide you with a list of reliable websites. The CF Foundation website is also a good source of information.

Communicate

Talking, even if the subject is not CF, is a good way to cope. Sometimes being able to talk about something other than CF gives you a sense of normalcy. Talking can be formal, as with a counselor or therapist, or informal, like talking with a friend. Talking also means educating someone about CF. However, some people don’t like to talk about themselves because they feel like they are burdening people.

Communicating with people virtually via social media through e-mails or good old-fashioned letters, is also a good way of coping. For family members who aren’t talkers, a family journal can be a means to communicate. For individuals, writing in a journal or drawing in an art journal may also be helpful.