More than Breath: Grief, Anxiety, and Resilience in the Experience of Severe Asthma

Written by: Olivia Mickles

Edited By: Keoni Andrews

When the body can no longer be trusted to perform its most basic function, breathing, then psychological stability becomes deeply intertwined with physical survival. Severe asthma is a chronic lung disease that affects around 262 million people worldwide and caused about 455,000 deaths in 2019 alone (World Health Organization, 2024). It can develop at any age, sometimes present at birth usually from genetic predisposition, or can be triggered by smoking, pollution, obesity, or other medical conditions. Asthma occurs when the airways become hyperresponsive and inflamed, constricting the muscle around the airways, making it more difficult to breathe.

Symptoms can range from mild to severe, including coughing, wheezing, shortness of breath, and chest tightness, leading to a life of uncertainty, restriction, and avoidance. Breathing should be an automatic given, so when this process is challenged by asthma, an individual must learn to be open to grieving the parts of life made risky or unavailable for them. In order to face and regulate their anxiety to not live in a state of constant hypervigilance, and to build resilience to get through the bad days without letting asthma become their identity. Dealing with severe asthma through the lenses of grief, anxiety, and resilience all have in common that an individual must constantly battle the desire to have full control over their body, environment, and circumstances while actually having little to no control over the greater factors that influence their condition. Therefore, severe asthma is not only a physiological condition, but a deeply psychological and social experience shaped by non-finite grief, heightened anxiety, and the resilience of individuals and their communities. Understanding the bidirectional relationships between emotional processes and asthma reveals that improving quality of life requires not only addressing the airways, but the lived emotional realities of those affected. 

Asthma produces a unique form of grief that cannot be reconciled because the source of loss persists and cannot be put to an end. This is often referred to as non-finite loss, or the enduring loss precipitated by a negative life event that usually retains a physical presence, psychological presence, or both. It has to do with a crisis of one’s self-identity or experience that creates a sense of disconnection from mainstream life (Bruce & Schultz, 2002). Chronic illness is a form of ongoing, non-finite loss as it restricts individuals from being able to comfortably participate in various aspects of a “normal” functioning world. For someone with severe asthma, they must take medication (e.g. budesonide formotorol) in the morning and at night, obligating them to allot time for that each day, and obligating them to schedule their lives around taking their medication. One cannot simply rush out in the morning or go out with friends at night without their medication, which is not commonly carried on one’s person all day. It is important to note that in this context, “medication” does not refer to the albuterol “rescue” inhaler that all asthmatics should have on them at all times; it is a much stronger corticosteroid that is necessary to reduce severe airway inflammation. Severe asthmatics also face the challenge of rearranging their lives when their symptoms flare and finding a balance of continuing with daily life duties while taking care of their health. The results of flare-ups could be mild, such as sleep loss, anxiety, and shortness of breath, or severe, such as chest tightness or an asthma attack (World Health Organization, 2024), resulting in feeling a loss of physical freedom, unpredictability in an area of life where the majority of the population faces no threat, and a loss of a “normal” identity. These issues, however, are not ones that doctors can commonly provide aid for. Professionals are so familiar with the breadth, depth, and content of their knowledge that they can easily underestimate the emotional impact of the information the patient is receiving and overestimate what an individual, or the parent of a child, understands (Bruce and Schultz, 2002). For example, I was diagnosed with severe asthma when I was seven years old, and my parents did not know anything about the condition. As kind and knowledgeable as my doctor was, I ended up taking a half dose of medication every day for almost a year, and struggled greatly, because the instructions were not clearly explained to my parents. I also did not fully understand what asthma was on a biological and physical level until I looked it up myself, almost ten years into my diagnosis, when I realized I did not actually know what was going on in my body. Therefore, doctors, in my opinion, should undergo training on how to explain diagnoses to patients clearly and effectively while also considering their emotional wellbeing. Chronic diseases are not discussed often in terms of grief and loss, but asthmatics miss out on enjoying so many social, athletic, and outdoor opportunities, along with a sense of normalcy and freedom, due to their condition, which only gets increasingly painful as the years pile on. 

If we are to acknowledge our grief, it is important to familiarize ourselves with the Five Gates of Grief, each of which helps us to understand how the many ways we can experience loss influence our lives (Weller, 2015). The gate that resonates most with grief and asthma is called Everything We Love, We Will Lose, and includes the notion that lingering illness can activate a feeling of loss.  Prolonged sickness can lead to one lamenting the life they once knew and enjoyed, and leaving them to feel diminished, drained, vulnerable, and betrayed by their body, “as though we no longer have a foundation beneath us for living fully” (Weller, 2015). As a severe asthmatic, the word “betrayed” fits so well with my experience of thinking “why me?” and “it’s so unfair”. The condition requires so much time, thought, and energy every single day so it is difficult not to grieve the memory of running freely at recess in elementary school, or of being able to go places without the constant worry of “what if something triggers a flare-up or attack?” and “do I have my medicine on me?”. However, Weller powerfully states, “But we are not meant to go back”, and says that one must acknowledge that they have been uprooted by their illness and is now in a completely new place than before, unable to turn back, and forced to change. If one does not change and allows themself to be pulled into their metaphorical, or literal, grave, they will never leave the grief behind to face a more complex self that is both beautiful and in pain. Embracing that, he says, is how to embrace the rocky terrain of life. 

This kind of grief is not only a non-finite outcome; it is also a trigger. Although the cause of asthma is mostly biological, grief may initiate or intensify it. Researcher Levitan performed a case study of six patients in his practice whose asthma suddenly began during a period of mourning. It was suggested that the intensity of their grief was a key psychological factor that promoted the onset of asthma, and it was proposed that the unusual intensity of emotion along with the patient's inability to control their emotions associated with mourning were what was responsible. It was therefore hypothesized that when the intensity of emotion reaches a certain degree, the parasympathetic nervous system gets overstimulated, and the individual is stuck in a state of hyperarousal, which could potentially trigger asthma to develop as a stress response (Levitan, 1985). Levitan also made note of a past study done by Knapp and Nemetz (1957) that found that asthmatic patients often present with melancholic personality features, a depressed mood, and a sense of hopelessness, and that 10% of asthma attacks, in the contexts studied, occurred immediately after feelings of sadness. So, not only does having asthma create a sense of grief and sadness in asthmatics, it is also exacerbated by that grief and sadness. I definitely have recognized this relationship since my symptoms, of chest tightness and shortness of breath, noticeably flare after feeling intense depressive emotions for long periods of time. Finally, crying and laughing are also especially strong triggers as noted by health care professionals, and myself from experience, because the overactivation of the immune system, along with heavy breathing or hyperventilation, releases hormones that trigger the airway muscles to tighten (National Jewish Health, 2017). So, severe asthma makes even therapeutic and stress-releasing emotional responses, like crying and laughing, cause for concern, which could make an asthmatic feel very frustrated and isolated.

Anxiety is a basic human response to uncertainty, and Chorpita and Barlow (1998) explain that early life experiences with diminished control could lead to an increased vulnerability to it. Severe asthma creates an environment that is riddled with opportunities for anxiety to manifest, especially in children who are still developing their perceived locus of control, while asthmatics should be aware of their triggers, symptom flare-ups and attacks are not always predictable and can happen for reasons out of one's control. However, one cannot just not go outside,  attend social events, or express emotions, so this bidirectional relationship between asthma and anxiety can cause further problems like avoidance, excessive worry, anxiety attacks, or more common flare-ups in everyday circumstances due to nervous system hyperarousal. This is why Chorpita and Barlow (1998) highlighted the importance of a strong family support system for young people, because more responsive, less intrusive parents make a child feel more in control and safe in their environment. If a child is born with severe asthma and does not feel that they can depend on anyone for support or safety, their anxiety will increase, which further intensifies their symptoms. 

How does this relationship between asthma and anxiety work exactly? A recent study used fMRI to show that certain brain circuits, specifically the anterior cingulate cortex and insula, are activated in response to an inhaled antigen, a substance that triggers an immune response, generating brain signals that are associated with and predictive of airway inflammation. When an antigen was inhaled, mast cells, the “first responders” of our immune system, released histamine and leukotrienes, pro-inflammatory mediators that drive asthma and inflammation, causing a bronchospasm, or the immediate tightening of muscles lining the airways. This effect was seen over the course of six hours, with lung function declining from ~100% to ~50% due to increasing inflammation of the airways. Additionally in this study, researchers found that both acute and chronic stress do not cause inflammation, but intensify it if already present by increasing cortisol levels, which enhances inflammation. So, if an asthmatic's symptoms flare because of uncontrollable inflammation or inhalation of an antigen that causes inflammation, which are common, they will likely feel stress because their health is at risk, and that stress will only exacerbate inflammation, making symptoms worse (Busse, 2012). Asthma and anxiety are in a vicious cycle with each other, making anxiety physiologically embedded in the body, and the mind able to shape one’s breathing capacity. It is difficult not to feel so much loss of control over something the majority of the world does not even need to think about. 

The psychological burden of anxiety on asthma extends beyond symptom management; it shapes how individuals interpret and live with their condition every day. Many people strive to maximize their quality of life, yet having mental or medical conditions, or both, can make this far more challenging to accomplish. A recent study showed that individuals with severe asthma had worse mental and physical health related quality of life (HRQoL) with corresponding higher anxiety scores than individuals without asthma. Severe asthma patients also expressed stronger beliefs about the essential nature of their medication than those without the condition, and reported having high anxiety over accessibility to medication as well as its side effects. As corticosteroids are required by all chronic asthmatics to be able to breathe twelve hours at a time, it is something they could not live a day without; yet taking corticosteroids daily, especially from young, can lead to mild to moderate side effects. One known side effect is stunted growth, so, for example, I was projected to be about 5’ 10”, but then started twice-daily corticosteroids at age seven, and now I am 5’ 4”. It would therefore be beneficial to integrate psychological resilience techniques into asthma treatment to reduce anxiety and lower worry regarding managing the disease and treatment. This addition could also improve the issue of poor adherence to treatment, caused by high anxiety and subsequent suspicion, which could improve an individual’s quality of life. (Rönnebjerg et al., 2023). Taking mental HRQoL seriously in individuals with chronic diseases like asthma is so important because some common symptoms in anxiety disorders include feeling hopeless, worthless, scared, and alone, leading to individuals becoming isolated, taking part in substance abuse or self-harm, engaging in medical neglect, and exhibiting a wide range of other destructive behaviors. By addressing this “dark side” of the disease, doctors can not only treat patients with medication, but also with anxiety-reducing and calm-inducing interventions that promote self-compassion and teach individuals how to ground themselves in times of distress (Rönnebjerg et al., 2023). 

If healthcare professionals aim to lower anxiety levels for those with severe asthma, not only would symptoms and quality of life improve, but also greater structural problems. People with generalized anxiety disorder (GAD) have had a major negative social and economic impact on society due to decreased work productivity and an extreme increase in health care utilization (Wittchen, 2002). This has cost the United States approximately $42 billion. They illustrate that GAD is already a significant burden for people without other physical or mental conditions, so if you combine GAD with a potentially life-threatening condition, those individuals are likely to go to the hospital and other doctors far more often and have far worse work performance. The article also covers the various SSRIs, SNRIs, and other medications that one can take to manage their anxiety, but they all come with varying rates of success and side effects, so an asthmatic may avoid these medications because they already take strong corticosteroids that come with their own side effects. This is another reason why non-pharmaceutical interventions should be put in place for people with chronic illnesses, to avoid having more drugs pulsing through their system, and to teach effective grounding and self-compassion techniques that make a lasting psychological difference and build resilience.

Resilience is the ability to understand what one does and does not have control over, and to adapt through challenging situations to come out having grown and learned. Resilience is not about not feeling pain; it is about knowing how to hold your pain and strength in balance. A study done by Baker (2019) examined the relationship between self-compassion and depression, anxiety, and resilience in people with epilepsy (PWE), another chronic illness that generates higher levels of grief and uncertainty. It is suggested that many components of self-compassion, like treating oneself with kindness and recognizing common humanity, can reduce depression, anxiety, and feelings of marginalization and stigma that PWE feel as a result of their condition. Self-compassion was also shown to reduce the amount of time spent ruminating and preoccupying oneself with fear of evaluation from others, further lowering depression and anxiety levels. It is easy to ruminate over one’s poor physical health and what others may think, especially with very noticeable and anxiety-inducing conditions like epilepsy and asthma, but doing so can lead to self deprecating or hopeless thoughts that make one feel alone in their struggles or avoidant of the good life has to offer. Therefore, highly self-compassionate individuals experience more positive than negative automatic thoughts, which leads to less worry, which can lower anxiety. Finally, Baker (2019) showed that self-compassion increased resilience in PWE because they are already familiar with facing high levels of adversity, and, so, resilience was easily recognized as a valuable skill to protect against the negative factors of the condition. 

Resilience, however, does not need to be found or created alone; it can be structurally dispersed in communities. Asthma, especially pediatric asthma, is a leading global health concern that disproportionately affects children in low-income areas with stressors such as air pollution, allergens, and psychosocial stress, as these factors can aggravate symptoms and hinder treatment management. A series of case studies done by Lichtveld et al. (2026) examined the relationship between childhood asthma and community resilience and how environmental and social stressors determine asthma risk and management. Various implications to create resilience were identified and discussed, with one being having health care professionals educate communities, families, and individuals affected by asthma about the biological pathways that are affected by changes in the environment.

This can include information similar to that presented by Busse (2012) regarding how pollutants have a direct negative effect on airway inflammation, and how the effects can be mitigated by actions like purchasing affordable home air-filtration systems and reducing the use of aerosol propellants. Education can also be extended to public health professionals and policy makers about asthma triggers and possible interventions to foster community resilience and improve general health. An implication of this could be creating dedicated asthma counseling groups out of community health workers who provide asthma trigger and symptom screening in schools, clinics, and other community settings. They could also alert families to common triggers such as pets, mold, dust, and smoking in the home, and then also how to reduce those triggers to make their environment more asthma-friendly. This intervention costs those benefiting from it almost nothing, so it would be practical to implement in low-income areas, and it allows families to build relationships with the community health workers, so, if medical assistance is ever needed, they know where to go, and  who can help them. Overall, Lichtveld et al. (2026) highlight the severity of childhood asthma and that adverse health outcomes are strongly influenced by community-level moderators, such as social support, community assets, access to healthcare, and environmental influences. Not all communities have the same support or resources, therefore  interventions must be put in place to close this gap, or else vulnerable populations will continue to struggle more than they should. 

Resilience in the context of severe asthma is not about the ability to cope, but about the process of reclaiming a sense of control over one’s body, finding meaning in life other than avoiding having an attack, and finding stability in an uncertain world. Grief and anxiety feed off the unstable and chronic nature of asthma, yet resilience can be a counterforce that allows people to adapt and live happily without having to deny their struggles and pain. By implementing interventions to improve social support and self-efficacy in communities, families, and individuals, physical and mental health related quality of life for those with severe asthma can improve. Grief, anxiety, and resilience are often seen today as individual matters, but research has also shown that one is really better off when they treat their grievances and growth as a collective process. 

In summary, severe asthma is a complex condition that millions of people suffer from worldwide, which is integrated with emotional pain and struggle. As one person among the millions, I resonate strongly with the asthmatic individuals discussed in the literature on the topic of grief, anxiety,  resilience,and severe asthma. There will always be a ribbon of grief running through who I am because I am subtly, and often invisibly, struggling to keep up with the non-asthmatic population. However, I have come to realize that being resilient against my asthma is not about not caring or pretending it does not exist, it is about unapologetically allowing my condition to be a part of my identity. I have been aiming to not allow my anxiety, general and specifically health-related, to get in the way of my happiness or be an excuse to avoid living a full life, but, as described above, it can be extremely difficult to fight fears of the unknown. Breathing, to asthmatics, is something that must be fought for every single day, so, to truly support individuals with severe asthma, we must move beyond only caring about whether or not those diagnosed with the condition can breathe and attend to the emotional realities that shape every breath taken and that are shaped by every breath lost. 

References

World Health Organization. (2024). Asthma. World Health Organization; World Health Organization. https://www.who.int/news-room/fact-sheets/detail/asthma 

Bruce, E., & Schultz, C. (2002). Non-finite loss and challenges to communication between parents and professionals. British Journal of Special Education, 29, 9-13.

Weller, F. (2015). The wild edge of sorrow (ch. 3, pp. 23-70). Berkeley, CA: North Atlantic Books.

Knapp PH. Nemetz SJ: Sources of tension in bronchial asthma. Psychosom Med 19:466- 485,1957.

Levitan. H. (1985). Onset of asthma during intense mourning. Psychosomatics, 26(12), 939-941. https://doi.org/10.1016/S0033-3182(85)72759-4 

Emotional Triggers for Childhood Asthma |How to Reduce Risk. (2017). National Jewish Health. https://www.nationaljewish.org/conditions/pediatric-asthma/overview/triggers/emotions

Busse, W. W. (2012). The Brain and Asthma: What Are the Linkages? Allergy and the Nervous System, 98, 14-31. https://doi.org/10.1159/000336495

Wittchen, H.-U. (2002). Generalized Anxiety Disorder: Prevalence, burden, and cost to society. Depression and Anxiety, 16, 162-171.

Chorpita, B. F., & Barlow, D. H. (1998). The development of anxiety: The role of control in the early environment. Psychological Bulletin, 124, 3-21.

Rönnebjerg, L., Axelsson, M., Hannu Kankaanranta, & Ekerljung, L. (2023b). Health-related quality of life, anxiety, depression, beliefs of medication and self-efficacy in individuals with severe asthma – a population-based study. Journal of Asthma, 1–12. https://doi.org/10.1080/02770903.2023.2248512

 Lichtveld, M. Y., Heimke, K. K., Dietz, L. J., Wahid, F. A., Buchanich, J. M., Earle, B. C., Noah, T. L. (2026). Childhood Asthma and Community Resilience. Pediatric Pulmonology, 61(2). https://doi.org/10.1002/ppul.71513

Baker, D. A., Caswell, H. L., & Eccles, F. J. (2019). Self-compassion and depression, anxiety, and resilience in adults with epilepsy. Epilepsy & Behavior, 90, 154-161.