In a time of coronavirus, many are experiencing difficulty coping with social isolation and dealing with related stress. This only adds to the emotional impact of living with serious underlying illness.
In the roughly hour-long Pulmonary Fibrosis Foundation (PFF) 2019 webinar “Pulmonary Fibrosis and Mental Health: A Roadmap for Coping,” Deborah A. Gillman, PhD discussed mental health issues and effective coping strategies for adults living with PF. Dr. Gillman is a clinical psychologist and the founder of an outpatient mental health program at the University of Pittsburgh’s Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease.*
Part of the PFF’s Disease Education Webinar Series, the webinar was hosted by David J. Lederer, MD, MS, former Senior Medical Advisor for Education and Awareness for the PFF.
Presentation Overview (first half-hour)
Chronic Illness and Mental Health
- Gillman stresses there are many ways of responding to and coping with PF. Not all patients require professional counseling, but many need assistance dealing with issues like breathlessness, loss of independence, and disease course uncertainties.
- Research shows that depression and anxiety are higher in chronic illness, with panic and anxiety especially common in respiratory disease (as much as 38% of patients versus 18% in the general population).
- A 2013 study in Chronic Respiratory Disease showed nearly 58 of 118 IPF patients were depressed and women were more at risk. However, age and level of disease severity did not predict depression in individual patients.
- Interviews of people with IPF show they struggle with managing many issues ranging from chronic cough and breathlessness to relationship impacts and caregiver struggles.
- A 2014 research editorial in Respirology said depression and anxiety need special attention in interstitial lung disease because of their frequency with breathlessness. Repeated screening and symptom management were advised to sustain and/or improve function with IPF.
- The stages of grief in adjusting to losing a loved one can also be applied to PF: denial, anger, bargaining (“what if” and “if only” questions to negotiate our way out of pain), depression (not the same as clinical depression), and acceptance (though not being okay). These emotional states are fluid and can be viewed as signposts that help us describe what we’re feeling.
- Gillman emphasizes patients should feel they have “permission” to express grief even when coping well. “Feelings do not follow rigid rules, but come up and are influenced. You have to have permission to feel different ways.”
- Patients are often referred for counseling after expressing grief or if feeling they are not coping well. But again, feeling sad is not the same as clinical depression; the latter involves emotional instability such as frequent crying, feelings of hopelessness/despair, and changes in sleeping or eating, for example.
- In PF, breathlessness plays a big role in depression. A 2011 study in Chest showed 12 of 52 ILD patients with signs of depression related to moderate shortness of breath and function. Again, frequent screening for and treatment of depression was advised.
- A PF patient may look depressed from being breathless and losing function, but not actually be. A person’s overall health status must be considered (example, is the patient using enough oxygen to avoid undue tiredness?).
Depression Evaluation and Treatment
- In assessing and treating depression, besides knowing the PF patient’s state of mind before diagnosis and any past treatment, it is important to consider whether the patient’s and/or caregiver’s goals for living with the disease are both being met or if there is a conflict. A conflict in choices being made, for example, could leave the patient appearing depressed or anxious.
- Available treatments are talk therapy; using resources and exploring further supports like local support groups through the Pulmonary Fibrosis Foundation and one’s faith community; medication; and initiating behaviors we know we should do (“the value of doing”).
- Initiating good behaviors involves scheduling activities one may not feel like doing but can make a big difference in reducing social isolation and feeling better.
- Anxiety is how the body responds to fear. It is likely to occur in PF.
- Anxiety often accompanies impaired breathing because the same part of the brain controls both systems. Moreover, the fear caused by breathlessness conditions a person to become anxious.
- Anxiety is rooted, therefore, in the mind-body link.
- Triggers for anxiety in PF include breathlessness and breath-holding (bodily); scary events and bad news (environmental); and worries, fears, or emotional difficulties (mental).
- Available treatments are talk therapy (discussing anxiety triggers, for instance); behaviors that help manage breathlessness-related anxiety (example, diaphragmatic or “belly” breathing); using resources and exploring further supports; medication; maximizing oxygen therapy; and physical conditioning, as through pulmonary rehab. All these methods can help make anxiety more manageable.
- For obsession over future PF progression, Dr. Gillman notes there are cognitive therapy skills to help adjust the thought process and turn from worrisome thinking. Certain medications can also be effective for intense anxiety. Professional consultation is advised to determine what level of intervention is needed.
- Everyone is different. Just as not everyone with PF is depressed, not all PF patients will have significant anxiety and require treatment. There are many ways to live with disease and cope.
See the webinar through the PFF website. To view slides in full screen, the webinar can also be viewed on YouTube.
Patients can email any questions to the PFF Patient Communication Center at firstname.lastname@example.org.
*Pulmonary Fibrosis Foundation. (2019, February 22). Pulmonary Fibrosis and Mental Health: A Roadmap for Coping [Webinar]. In PFF Educational Resources – Disease Education Webinar Series.