Strategies for coping with ILD

Strategies for Coping with ILD

December 5th, 2024

Interstitial lung disease (ILD) is a chronic and life-limiting lung disease with no curative options which can take a significant emotional toll on sufferers. A diagnosis of ILD comes with feelings of anxiety and uncertainty about the future. As the condition progresses, patients are also confronted with the physical limitations of the disease which can cause them to struggle to perform normal daily activities and begin limiting social interactions.

Consequently, levels of depression are often high among ILD sufferers. One recent study estimated the prevalence of depression in ILD patients to be 14-49% [1]. Common signs of depression include feelings of sadness, reduced energy, a loss of interest in activities, and changes in sleep habits and appetite [2]. Untreated depression In ILD sufferers can lead to impaired quality of life, decreased exercise capacity and an increase in acute exacerbations, hospital admissions and caregiver dependency [1].

Given the impact ILD can have on an individual's mental health, it is important that ILD patients develop healthy coping strategies. This blog will explore some strategies ILD patients can use to help them cope with this challenging and often overwhelming condition.

Practise good self-care

Practising good self-care includes maintaining a healthy lifestyle, having good sleep habits, stopping smoking, taking medication as directed and attending clinic appointments when necessary. A key component of a healthy lifestyle would be to engage in regular physical exercise. This may be challenging for ILD patients due to the physical restrictions imposed by the disease and symptoms such as breathlessness, fatigue and fears they may further exacerbate their condition [3].

ILD patients should be encouraged to remain as physically active as possible. Group-based activities such as pulmonary rehabilitation, an exercise and disease education program have been shown to be particularly effective and should be undertaken by ILD patients if available [4]. Physical exercise can benefit patients both physically as well as giving them a sense of achievement which can positively influence their mental well-being and help them deal with feelings of depression [5].

Maintain a positive outlook

Maintaining a positive outlook can be a challenge in ILD given the progressive nature of the disease. Many ILD patients report feeling frustrated about things they are no longer able to do and their ability to live their later years as they planned [3].

ILD patients often report feeling more positive when they accept their diagnosis and adapt their lives accordingly [3]. This may involve setting more realistic goals which can help provide sufferers with a renewed sense of achievement [3]. However, in order to reach their goals is it important that ILD sufferers learn to both plan and prioritise their activities and to ask for help when needed [3]. The setting of goals can also provide ILD sufferers with a sense of purpose and direction and help them look to the future with more optimism.

Use relaxation techniques

Relaxation techniques including breathing exercises can help ILD patients cope by helping relieve symptoms of breathlessness. In ILD breathlessness occurs as a result of scarring of the lungs which causes them to stiffen and limits their ability to expand properly. Breathlessness can significantly impact the sufferer's ability to perform normal daily tasks leading to feelings of frustration and anxiety.

Some breathing techniques that may be helpful in ILD include:

Pursed-lips breathing: Breathe in gently through your nose, then purse your lips as though you are going to blow out a candle. Blow out with your lips in this same position for as long as you feel comfortable. Repeat until you feel more relaxed.
Diaphragmatic breathing: Begin by lying on your back with your eyes closed, knees bent and head supported. Place one hand on your chest and the other on your stomach to feel your diaphragm move as you breathe. Then breathe in slowly through your nose and out slowly through pursed lips. Repeat until you feel more relaxed.
Blow-as-You-Go: Breathe in before starting an activity, and then exhale as you perform the activity. This can be used in combination with pursed-lip breathing.
Paced breathing: When performing an activity, match your breathing to your physical steps. This can be used in combination with pursed-lip breathing.
Relaxed slow and deep breathing: During exertion, try to slow your breathing and inhale more deeply ideally through your nose or with pursed lips.

Breathing exercises can strengthen respiratory muscles helping to lessen breathlessness and fatigue and consequently improve quality of life in ILD patients [6].

Seek support from others

ILD patients may seek to withdraw from social interactions due to a lack of awareness and understanding by others of the condition, the risk of catching respiratory illnesses and the physical limitations imposed by the disease [7]. These reductions in social interaction can result in an unfulfilled need for relatedness and can negatively influence overall well-being and quality of life [3].

It is important that ILD patients seek support from friends and family members and attend patient support groups if they are available. Patient support groups in particular allow patients to exchange knowledge and share experiences, which can help patients adapt to living with their condition [3]. There is also some evidence that participation in support groups may help ILD patients overcome feelings of isolation and depression and can improve overall health [8].

Undoubtedly ILD can exact a significant emotional toll on sufferers, often leading to feelings of anxiety and depression. Consequently, it is important that sufferers practise good self-care, set realistic goals, join support groups, and remain as physically active as possible. These strategies can all have a significant impact on the quality of life of those living with ILD by helping them cope with their diagnosis and the progression of the disease.

To join our mission,

Get In Touch

electronRx partner with healthcare providers, payers and pharmaceutical companies across the globe, harnessing the power of digital biomarkers to manage breathing disorders effectively.

Want to learn more or request a demo?

References

[1] Yohannes AM. Depression and anxiety in patients with interstitial lung disease. Expert Rev Respir Med. 2020;14:859–862.

[2] NHS. Symptoms - Depression in adults [Internet]. [cited 2024 Jul 3]. Available from: https://www.nhs.uk/mental-health/conditions/depression-in-adults/symptoms/.

[3] Senanayake S, Harrison K, Lewis M, et al. Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management. PLoS One. 2018;13:e0197660.

[4] Dowman L, Hill CJ, May A, et al. Pulmonary rehabilitation for interstitial lung disease. Cochrane Database of Systematic Reviews. 2021;2021.

[5] Luu B, Gupta A, Fabiano N, et al. Influence of pulmonary rehabilitation on symptoms of anxiety and depression in interstitial lung disease: A systematic review of randomised controlled trials. Respir Med [Internet]. 2023;219:107433. Available from: https://www.sciencedirect.com/science/article/pii/S0954611123003219.

[6] Borge CR, Hagen KB, Mengshoel AM, et al. Effects of controlled breathing exercises and respiratory muscle training in people with chronic obstructive pulmonary disease: results from evaluating the quality of evidence in systematic reviews. BMC Pulm Med. 2014;14:184.

[7] Schoenheit G, Becattelli I, Cohen AH. Living with idiopathic pulmonary fibrosis. Chron Respir Dis. 2011;8:225–231.

[8] Magnani D, Lenoci G, Balduzzi S, et al. Effectiveness of support groups to improve the quality of life of people with idiopathic pulmonary fibrosis a pre-post test pilot study. Acta Biomed. 2017;88:5–12.