Clinical Care

Optimizing the mental health of people with CF and their families plays a vital role in CF care.

Mental Health

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.

Managing stress

Manage Your Stress

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.

Be Organized

Organizing your schedule and belongings is one of the best ways to help reduce your daily stress. Being rushed, misplacing things, and not being focused causes unnecessary tension. If you have a daily routine that fits well into your life, you will not feel quite so rushed. If your surroundings are organized, then you will avoid worrying about unnecessary troubles such as finding your keys or locating your wallet. There are several smart phone apps that can be used to organize medication schedules.

Find Support

People with CF who have a network of family and friends tend to handle stress better than people who are isolated. If talking about your feelings is your outlet, having a group of people who are willing to listen is perfect. There are several social media sites that allow people with CF to share experiences. Life and living with CF will not seem so overwhelming if you know you’re not alone. If you feel isolated, communicate with your CF team.
 
Patient with CF and his family

Fitting It All In

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.

Putting it Back Together

Now that you have your priority list, see what fits and what can go. Take a snapshot of your life in a day or a week. Look at what you take time for, how you feel, what you think about, what your responsibilities are. List your priorities in a table (see below).

 

Health Priority 2 Priority 3 Priority 4 Priority 5

Ideally, the columns on the left of your table are filled with more activities than the columns on the right. Is there anything left on your list that didn’t fit? If so, examine your table and consider what can be eliminated to maximize your time doing the things that are most important to you.

Not Enough Time in the Day

Your life may look organized on paper, but you won’t know that until you apply your list to real life. You have 24 hours to fit in everything. Eight hours of that may account for sleep. Then there’s the time needed for CF treatments.

Routines and Schedules

Creating a routine or schedule is an effective way to manage your time. Routines focus on the task we wish to accomplish; the schedule tells us the amount of time we have to get it done. Your routine should correlate to your priority table, but be simple and flexible enough to avoid any unnecessary stress. If you find yourself trying to squeeze things in, it’s time to eliminate some things from your life.

Sticking to It

Here are some tips on how to stick to your routine:

  • Write it down. Use a planner, whether it’s an old fashioned print planner or stored in a mobile device or computer, to may sure you stay on task. Place a calendar where the whole family can see it for tracking appointments and events. Create a chart for children so that they can check on each part of their routine. This helps a child or teen take on more responsibility for his or her treatment regimen.
  • Communicate your schedule to the people in your life. Talk to children and teenagers about their routines, especially their treatment regimens, which will reinforce their importance. It will also remind, rather than nag, the child or teen about his or her treatment responsibilities.
  • Re-evaluate your priorities. Sometimes our routines become so routine they become mundane. Don’t be a prisoner to your routine—as your life changes so will your routines. If you find yourself in a rut, step back and re-evaluate your priorities and change your routines accordingly.

If you are having a hard time fitting your or your child’s treatment regimen into your routine, talk to your CF team. They will evaluate your regimen, and help you make it as efficient as possible.

Emotional Support

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.

Depression in Children and Adolescents

According to the American Academy of Child and Adolescent Psychiatry, approximately 1 in 20, or 5 percent, of children and adolescents suffer from depression. Just like adults, children and adolescents with CF are at higher risk of depression. Adolescents may be the most under-diagnosed population because many of the symptoms of depression are similar to typical adolescent behavior. Also, children and adolescents are unlikely to be familiar with possible symptoms of depression.

Diagnosis of depression in children and adolescents relies on the observation of others, usually a parent or guardian. While it is often difficult for a child or adolescent to communicate feelings of sadness and hopelessness, a parent may notice a change in normal behavior. A child who normally is very active and social with neighborhood friends, for example, begins to stay inside more often. Such a change in behavior does not necessarily mean that your child is depressed, but it is a sign that something could be wrong and worth further evaluation.

For more detailed information about depression in children and adolescents, please visit the American Academy of Child and Adolescent Psychiatry, Depression

For more information to share with your child or adolescent about depression, please visit Kids Health, Teens Site, Depression and Kids Health, Kids Site, Why Am I So Sad? for children.

Treatment for Depression

Your primary care physician is a good place to start. However, for further evaluation and treatment, a mental health provider is recommended. Licensed clinical social workers, psychiatrists, psychologists, and counselors are trained in treatment of depression and other mental health issues. Psychiatrists are the only providers among this group able to prescribe medication, so often a social worker, psychologist or counselor will work with a psychiatrist to provide care.

Depending on severity, depression can be treated with medication, psychotherapy or a combination of both. Severe cases of depression are most effectively treated by a combination of medication and psychotherapy, while milder cases may be treated with medication or psychotherapy alone. Once evaluated, your mental health provider will talk with you about which mode of treatment is right for you.

Accessing Mental Health Care

If you think you need a mental health care provider, contact your CF center’s social worker, who can help you access the appropriate type of care. If you do not have access to a social worker, let your primary care physician, CF doctor or nurse know about your concerns.

Insurance

Most insurance plans cover mental health services. To find out if your plan has a mental health benefit, check the back of your insurance card for a number for mental health benefits. Some important questions include:

  • What is my co-pay?
  • How many visits are allowed?
  • Do I need a referral?
  • Can you give me a list of providers in my area?

With most insurance plans there is a network of mental health providers. When you call the mental health number on your insurance card, ask for a list of providers in your area.  The social worker at your CF center may be able to help you navigate this system. More information about insurance coverage can be found at the American Psychological Association website.

Tips for Coping

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.

Support

Exercise

Exercise, which can help everyone feel better and manage stress, is especially encouraged for people with CF and their families.

Normalcy

Establishing a sense of normalcy for children and teenagers with CF, a sense of being like their peers, helps them cope. Try not to let CF exclude them from any opportunities in life; encourage them as you would if they didn’t have CF. This doesn’t mean you should minimize your child’s CF.  Rather, think of it as one of the many things that your child can say is part of his or her life. Being organized and keeping to a routine is also helpful in establishing a sense of normalcy.

Get Involved

Often parents, spouses and caregivers feel helpless. Finding ways to get involved in the CF community, like volunteering or fundraising, can make you feel less helpless. These are also opportunities to meet and get support from people who know what you are going through. But for some people, too much identification with CF disrupts their sense of normalcy. For these people, getting involved in other extracurricular activities can be more helpful.