Many aspects of cystic fibrosis can cause anxiety. These feelings can come and go as you manage the disease and with events or changes in your or your child's health. An anxiety disorder differs from normal anxiety because it can occur for an extended period of time and interfere with your ability to manage your CF effectively and experience a better quality of life.
Anxiety is one of the most common emotional issues that people face. People living with CF — or who have a child with CF — experience a great deal of stress. Making time for daily treatments, remembering to take medications, missing out on things you want to do, and being hospitalized for an infection all cause stress and anxiety, which affect emotional wellness.
Studies have shown that people with CF, as well as parents who take care of children with CF, are more likely to experience anxiety than people in the general population. People with CF and their caregivers who have anxiety are also more likely to experience depression as well.1
An untreated anxiety disorder affects both your physical and emotional health and how you care for yourself. For example, people with untreated anxiety:
- Are less likely to manage their treatment plans.
- Have a lower body mass index (BMI).
- Tend to have worse lung function.
- Experience more hospitalizations.
- Often have higher health care costs.
- Experience a lower quality of life.
Some of the symptoms of anxiety can be symptoms of other illnesses. Also, you may not experience all of these symptoms. Anxiety affects how you think and how much you think about certain things, but it also can have physical effects.
If you experience symptoms for at least six months, you may be suffering from an anxiety disorder.
Symptoms of anxiety include:
- Exaggerated worry.
- Muscle tension.
- Difficulty concentrating.
- Trouble falling asleep or staying asleep.
- Startling easily.
Children and teenagers may have additional symptoms, including worries about:
- School or sports performances.
- Being on time.
- Natural and man-made disasters, such as war or earthquakes.
- Fitting in with peers.
- Performing homework for long periods of time.
- Redoing homework assignments.
- Being perfectionists.
- Getting approval.
- Getting reassurance.
Don't Wait to Ask for Help
If you think you or your child might have an anxiety disorder, talk to your care team members. They can help you determine if you or your child has anxiety and help you get treatment. Most people who have anxiety can be treated successfully and overcome it. Treatment depends on how mild or severe the anxiety is, but typically includes counseling, medication, or a combination of the two. Most people with anxiety are treated successfully.2
Many people do not want to seek help for anxiety because they feel it is a sign of weakness or that it means they are "crazy." Many people also believe that they will be judged if other people find out. Anxiety is a medical illness that has nothing to do with how strong a person is and does not mean that a person is crazy. Seeking help for anxiety and doing something to treat it is a sign of strength and self-care.
What Increases My Risk for Anxiety?
The exact cause of anxiety is unknown. Having CF, or caring for a child with CF, increases your risk for anxiety. In addition, certain other factors also can increase your risk for anxiety, including:
- Girls and women are more at risk.
- Emotional trauma.
- A series of stressful events, such as the death of a family member or financial problems.
- Family history.
- Substance misuse.
- Attention deficit/hyperactivity disorder (ADHD).
- Other challenges to executive function (thinking, planning, organizing, and regulating behavior).
If you are a parent of an adolescent with CF and you have an anxiety disorder, your child is 2.2 times more likely to experience anxiety.3
Anxiety About Medical Procedures
In addition to the generalized anxiety disorder many people with CF or their parents may experience, some people experience a very specific form of anxiety centered on a fear of medical procedures. Many people with CF need to have medical procedures, such as placement of feeding tubes or peripherally inserted central catheter, or PICC lines, so this type of anxiety is common in the CF community.
Feeling nervous about medical procedures is natural, but the exaggerated fear, or phobia, that some people with CF experience before medical procedures is not normal when it interferes with their ability to manage their CF effectively.
How Is Anxiety Identified?
We don't always know what causes anxiety, but we can treat it effectively if the symptoms of an anxiety disorder are identified. After successful treatment, there are other skills and habits that you can learn that may help prevent the symptoms from reoccurring. Your care team may offer a screening to you or your child annually during one of your CF care center visits.
Your care center team may ask you or your child to complete a short survey that should take only a few minutes to finish. The survey may ask if you're experiencing feelings of anxiety, such as nervousness, uncontrollable worry, or difficulty performing your usual activities, such as going to work or taking care of things at home.
If the survey results suggest that you or your child may have an anxiety disorder, your CF care team may recommend further evaluation and treatment if necessary. If your care team does not include a mental health specialist, you may be referred to one who does not work at your care center and can evaluate your child to determine if treatment is necessary. For parents who may be experiencing anxiety, the CF care team may refer you to your primary care physician to coordinate your care.
It is important to be honest when completing the survey. Some people find it difficult to admit that they are struggling because it makes them feel like they are letting their families or loved ones down. On the contrary, asking for help is a positive step toward getting better. Anxiety can be treated successfully, but only if the symptoms are properly identified.
My mom was sitting beside me when I was doing a screening. Even though I should have answered 'yes' to many of the screening questions, I answered 'no' because I didn't want my mom to feel bad." — Hannah Buck, adult with CF, from the CF Community Blog
How Is Anxiety Treated?
Treatment for an anxiety disorder is highly effective and depends on how mild or severe the anxiety is. Treatment typically includes cognitive behavioral therapy, medication, or both. Some provide talk therapy, some prescribe medications, and some provide both talk therapy and prescribe medication.
|Provider Type||Provides Talk Therapy?||Prescribes Medication?|
|Licensed clinical social worker (LCSW, LICSW)||Yes||No|
Licensed marriage and family therapist (LMFT)
|Licensed professional counselor (LPC)||Yes||No|
|Clinical psychologist (PsyD, PhD)||Yes||Rarely|
|Psychiatrist (MD, DO)||Sometimes||Yes|
|Nurse practitioner (NP)||Sometimes||Yes|
|Physician assistant (PA)||Sometimes||Yes|
Cognitive Behavioral Therapy
Cognitive behavioral therapy can help you or your child identify and change unrealistic or unhealthy thoughts, emotions, and behaviors. After identifying unhealthy thoughts, emotions, and behaviors, you challenge and replace them with more effective thoughts and behaviors. Your mental health professional also may teach you relaxation techniques and deep breathing as part of your treatment.
Medication can help restore the balance of brain chemicals and is typically prescribed by a psychiatrist, who is a medical doctor with special training in identifying and treating anxiety. Although these medications are commonly known as antidepressants, they also are very effective at helping people with anxiety. One class of antidepressant medication commonly prescribed to treat anxiety is serotonin reuptake inhibitors (SSRIs). SSRIs work by preventing the reabsorption of the chemical serotonin, which can relieve anxiety. These medications can begin working within one to two weeks, but you might not experience their full effects for two to three months. If you have not begun to feel better after several weeks, tell your doctor or care team.
For people with more severe anxiety or anxiety that does not improve with either talk therapy or medication, treatment may be a combination of the two.
Coordination of Care
Because the treatment of CF is complex and involves many medications and different therapies, coordination between your CF care team and your mental health specialist is important to avoid any side effects or unintended drug interactions. Coordination is also important for monitoring your symptoms, adjusting your treatment plan, and providing follow-up screenings.
Talk to your care team and your mental health specialist about how to put them in contact with each other to ensure that you get the right care.
Treatment of Anxiety Related to Medical Procedures
Treatment of anxiety, such as a phobia related to medical procedures, begins with cognitive behavioral therapy. If anxiety levels before procedures do not improve, medications called benzodiazepines may be prescribed beforehand. Benzodiazepines are sedatives that help a person relax. They are for short-term use only, because they can be habit-forming.
Insurance providers often have different policies regarding coverage for the treatment of emotional issues, such as anxiety. Some cover a limited number of talk therapy visits. Some cover only medication. Check your insurance enrollment materials, or call your insurance provider for information about treatment for your anxiety. Questions you can ask your health insurance provider include:
- Do I need pre-approval or a referral from my primary care physician before I see a mental health provider?
- How many therapy sessions are covered?
- What is my coverage for in-network and out-of-network therapy sessions?
You also can contact Cystic Fibrosis Foundation Compass at:
Monday - Friday, 9 a.m. - 7 p.m. ET
Compass is a personalized service that can help you with insurance, financial, legal, and other issues. Experienced and dedicated Compass case managers help people with CF and their families understand their coverage options and connect them to community resources for affording care.
How You Can Help Yourself
In addition to care provided by a mental health specialist, you can do the following things to help yourself recover from an anxiety disorder and to help prevent the symptoms from coming back:
- Be physically active. Exercise can help reduce stress.
- Practice relaxation techniques.
- Avoid alcohol or drugs.
- Avoid caffeine and cigarettes, which can increase anxiety levels.
- Practice good sleep habits. Do your best to get enough sleep. Go to bed and wake up on a consistent schedule. Avoid staying in bed when you are not sleeping.
- Get outside or in nature for 30 minutes each day.
- Make time for things you enjoy.
- Continue with your treatment plan.
- Join an anxiety support group. Talking about your problems with people who have the same experience can help you feel less alone.
Although these activities are not a substitute for professional care, they can make a real difference in your anxiety levels.
1., 3. Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Sol A, Tiboshc MM, Brucefors AB, YAB, Y H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69:1090-1097. doi:10.1136/thoraxjnl-2014-205983
2. American Psychiatric Association: What Are Anxiety Disorders?