Many aspects of living with cystic fibrosis and the effects it has on your life can make you sad. These feelings may come and go as you manage the disease or experience events or changes in your or your child's health.
Depression is different. Unlike ordinary sadness, clinical depression can last for a long time — weeks, months, or years — if not treated. People who have depression can have extended periods where they feel hopeless and lose interest in things they normally would enjoy.
Researchers found that people with CF and parents who take care of children with CF are more likely to experience depression than people in the general population.1
Untreated depression can affect both your physical and emotional health, and interfere with your ability to take care of yourself or your child.
People with untreated depression:
- Are less likely to manage their treatment plans
- Tend to have worse lung function
- Have a lower body mass index (BMI)
- Experience more hospitalizations
- Often have higher health care costs
- Experience a lower quality of life
Knowing if you or your child is clinically depressed can be hard. Some symptoms of depression, such as fatigue or weight loss, also can be symptoms of CF.
“It's hard to know if you're depressed because with CF, you can feel tired and crappy anyway. You just think [what you're feeling] is part of it.” — Rich DeNagel, adult with CF
You or your child may be suffering from depression if five or more of the following symptoms are experienced for two weeks or more:
- Loss of energy
- Feelings of hopelessness or worthlessness
- Loss of enjoyment in things you or your child once liked
- Problems concentrating
- Uncontrollable crying
- Problems making decisions
- Sleeping more than usual
- Trouble falling asleep or staying asleep
- Unexplained aches and pains
- Stomach aches or other digestive problems
- Loss of interest in sex
- Sexual problems
- Loss of appetite and weight loss
- Weight gain
- Thoughts of suicide
- Suicide attempts
If you are considering suicide, immediately call:
- 988 (800-273-8255) (National Suicide Prevention Lifeline)
If you believe someone you know is thinking about harming himself or herself, call 911.
Don't Wait to Ask for Help
Trying to feel better on your own or delaying professional help can make things harder for you and your loved ones.
There are effective treatments for depression that can help you get back to living the life you want to live, so don't wait to ask for help.
If you think you or your child might be depressed, talk to a member of your CF care team about it. Depression is a medical illness that can seriously affect your emotional wellbeing — and your overall health — if the depression is not treated.
You may be able to help prevent depression by talking to your care team about how you're feeling before those feelings get in the way of your daily routine. Let them know if you're having trouble coping with a new treatment regimen or dealing with a change in your or your child's health.
Many CF care teams offer preventative support and screenings to help determine if you or your child is depressed and help you get treatment. Treatment will depend on how mild or severe the depression is, and may include getting help from a mental health professional with experience helping people with depression through counseling, medication, or a combination of the two.
What Increases My Risk for Depression?
Depression is a complex disease and the exact cause is unknown. Having CF, or caring for a child with CF, increases your risk for depression. In addition, certain other factors also can increase your risk for depression, including:
- Physical and emotional abuse
- Certain medications
- Family history
- Personal conflicts or arguments
- Death or another emotional loss
- Significant life events, even positive ones
- Other personal issues
- Substance misuse (almost 30 percent of people with depression misuse alcohol or drugs)
- 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 are depressed, your child is almost 2.5 times more likely to experience depression. Teenagers and young adults are more likely to experience depression than children younger than 12 and adults older than 30. Women are more likely to have depression than men.2
How Is Depression Identified?
We don't always know what causes depression, but we can treat it effectively if symptoms of depression are identified. After successful treatment, there are other skills and habits that you or your child can learn that may help prevent the symptoms from reoccurring.
Your care team may offer to screen you or your child annually during one of your CF care center visits. You and your child may be asked to complete a short survey that should take a few minutes to finish. The survey may ask whether you're experiencing feelings of sadness or hopelessness, how often you have felt them in the past two weeks, and how difficult these feelings have made it for you to perform your usual activities, such as going to work or taking care of things at home.
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're letting their families or loved ones down. On the contrary, asking for help is a positive step toward getting better. Depression can be treated successfully, but only if the symptoms are properly identified.
If the survey results suggest that you or your child may be depressed, your CF care team may recommend further evaluation to determine if treatment is necessary. If your care team does not include a mental health specialist, you or your child may be referred to a mental health specialist who works outside of your care center and can evaluate your child before offering the appropriate treatment. For parents who may be experiencing depression, the CF care team may refer you to your primary care physician who can coordinate your care. Other resources that can help you find a mental health provider include:
- Employee assistance programs.
- Health insurance providers.
- College or university student health or counseling services, if applicable.
How Is Depression Treated?
Treatment for depression is highly effective, and 80 to 90% of people with depression respond well to treatment.3 Treatment depends on how mild or severe the depression is and can include counseling such as talk therapy, medication, or both. There are several types of mental health providers. Some provide talk therapy, some prescribe medications, and some provide both talk therapy and prescribe medication.
Provides Talk Therapy?
|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|
Talk therapy involves meeting with a health care professional who specializes in treating depression, discusses your issues, and works with you to develop solutions. Common types of talk therapy for treating depression include cognitive behavioral therapy (CBT) and interpersonal therapy (IPT).
CBT can help you 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. IPT can help you identify issues that may be causing problems for you, such as conflicts in your relationships or unresolved grief.
Medication is typically prescribed by a psychiatrist who is a medical doctor with special training in identifying and treating mental health conditions. Medication can help to restore the balance of brain chemicals, which are called neurotransmitters. Neurotransmitters, such as dopamine and serotonin, are chemicals that relay signals between nerve cells. When they are out of balance, they can negatively affect your mood.
A common class of antidepressant medication is serotonin reuptake inhibitors (SSRIs). SSRIs work by preventing the reabsorption of serotonin, which can relieve depression.
Antidepressant medications begin working within one to two weeks, but you might not experience their full effects for two to three months. If you have not started to feel better after several weeks, tell your doctor. He or she can adjust your medication dosage or prescribe different medications to provide the best effect.
For people with more severe depression or depression 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 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 professional about how to put them in contact with each other to ensure that you get the right care.
The Affordable Care Act expanded coverage for conditions, such as depression, and most insurance providers cover preventive services, such as depression screening. Most large insurance plans cover depression screenings for adults and children older than 12 years.
Insurance providers often have different policies regarding coverage for treatment of emotional issues. Some cover a limited number of talk therapy visits. Some cover only medication. Call your insurance provider for information about treatment for your or your child's depression. 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 - Thursday, 9 a.m. - 7 p.m. ET and Friday, 9 a.m. - 3 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.
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 depression and prevent it from coming back:
- Talk with somebody, preferably in person. Many people with depression withdraw and isolate themselves from other people.
- Spend time with people who lift your spirits.
- Avoid alcohol or drugs.
- Make sure you do your CF treatments every day.
- 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.
- Exercise every day.
Although these activities are not a substitute for professional care, they can make a real difference in your mood.
1., 2. 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
3. American Psychiatric Association