Depression, anxiety and cystic fibrosis

People with cystic fibrosis (CF) and parents/caregivers who take care of children with CF are two to three times more likely to experience depression, anxiety or both, compared to people in the general population.*

Guidelines were published to help CF clinic teams provide effective care for people with CF and their families with depression, anxiety or both. The following recommendations are intended to help you understand that, although moments of sadness and anxiety are normal to experience, persistent depression and anxiety should be treated as part of your overall health and emotional wellness.

What is depression?

Depression is a common medical illness that negatively affects the way you feel, think and act. Unlike occasional sadness, clinical depression can last for a long time—weeks, months or years—if not treated. People who have depression can have extended periods when they feel hopeless and lose interest in things they normally would enjoy.

Symptoms of depression:

• Sadness or irritability
• Changes in weight or appetite
• Guilt, hopelessness or worthlessness
• Fatigue or loss of energy
• Sleep disturbances (sleeping too little or too much)
• Restlessness or decreased activity
• Physical aches and pains with no medical cause
• Thoughts of suicide or death
• Inability to concentrate, remember things or make decisions
• Loss of interest in activities once enjoyed

What is anxiety?

Anxiety is a normal emotion that comes and goes in response to fears or worries about changes in health, work, relationships or finances. A person may have an anxiety disorder if the anxiety does not go away, gets worse over time or prevents them from participating in activities of daily living.

Symptoms of anxiety:

• Restlessness or feeling on edge
• Being easily fatigued
• Difficulty concentrating or mind going blank
• Irritability
• Sleep disturbance such as difficulty falling or staying asleep, or restless, unsatisfying sleep
• Muscle tension

When left untreated

Untreated depression or anxiety can affect your physical and emotional health and interfere with your ability to take care of yourself or your child. People with untreated depression or anxiety:

• Tend to have worse lung function
• Have a lower body mass index (BMI)
• Are less likely to manage their treatment plans effectively
• Experience more hospitalizations
• Have more absences from school or work
• Experience a lower quality of life

It is important to consult your healthcare provider if you feel you are developing symptoms of depression, anxiety or both.

What you can do if you think you are depressed or have anxiety.

While feelings of depression and anxiety can be a normal response to living with CF, there are things that you can do to prevent, get help for, and reduce the risk of either depression or anxiety from returning.

Learn New Coping Skills: Your CF clinic team will work with you on effective ways to manage stress and provide ongoing age-appropriate information on how to cope with a chronic disease like CF.

Get Screened: If you have CF and are at least 12 years old or are a caregiver for a child with CF you can complete two short screening surveys for depression and anxiety which is administered by your CF clinic.

Get Help: If the screening survey results suggest you are struggling with depression, anxiety or both, your CF clinic team can recommend further evaluation and may recommend treatment.

What can you do to stay well?

If you have mild symptoms or recognize the beginning signs of depression, anxiety or both, talk to your CF clinic team. They can work with you to maintain your emotional health. The following are ways that you can prevent problems with depression or anxiety from getting worse and limiting their impact on your life or that of your loved ones.

• Talk with somebody, preferably in person; many people with depression withdraw and isolate themselves from other people
• Spend time with positive people who lift your spirits
• Avoid alcohol or drugs
• Continue your CF treatment plan
• Practice good sleep habits; go to bed and wake up on a consistent schedule and avoid staying in bed when you are not sleeping
• Get outside in nature for 30 minutes every day
• Make time for things you enjoy, prioritize yourself
• Be physically active, exercise can help reduce stress
• Practice relaxation techniques
• Avoid caffeine and cigarettes, which can increase anxiety levels
• Join a support group, talking about your problems with people who have the same experiences

Counselling

Below are different ways to access counselling support across Canada. It is important to note that each province and territory will have different ways to access these supports.

• Reach out to your CF clinic mental health provider - if a psychiatrist, psychologist or counsellor are part of your CF clinic team you can access services at no cost.
• Look into your (or your spouse’s or caregiver’s) employer Extended Health Benefits (EHB) as you may have access to a certain dollar amount annually for private counselling services.
• See if your (or your spouse’s or caregiver’s) employer offers an Employee and Family Assistance Program (EFAP) which includes short-term counselling.
• Look into private counsellors, some will have low cost sessions available for those in financial need.
• Look into community non-profit counselling services as they are generally low in cost or free and are provided through community centres or through stand-alone programs that are funded by grants, donations or through the government.
• Look into free public mental health counselling services offered through your provincial or territorial Ministry of Health.
• Many universities and counselling training programs run student staffed counselling clinics for free or at a low cost which are supervised by counselling professionals. You do not have to be a student to access these programs.
• Some regions or CF clinics may have access to specialized funding for counselling services.

Please note this is not an exhaustive list - depending on where you live in Canada some of these options and others not mentioned may be available to you.

It is important to discuss all of your options with your CF clinic social worker if you are seeking counselling or therapy services.

Cystic Fibrosis Canada CF Helpline:

Cystic Fibrosis Canada has a Helpline to answer your non-urgent questions and help connect you with the community and government resources available to you. We’re here and ready to chat during business hours Eastern Time at 1-800-378-2233 or you can email us at helpline@cysticfibrosis.ca. (Note that this is not a crisis line.)

When you or someone you know is in crisis

• The Canadian Government operates a website listing mental health resources and a safe space to talk, 24 hours a day, every day of the year. Visit 988.ca 
• If you are thinking about suicide, or you’re worried about someone else, responders are their to help, call or text 9-8-8 toll free, any time - lines are open 24/7/365.

* Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tiboshc MM, Brucefors AB, Yüksel 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.