COPD and Mental Health: Living With the Fear of Breathlessness

COPD and mental health are linked through breathlessness, panic and shame. Read about the fear of breathlessness, the family role and ways to find support.

Stopping halfway up the stairs to grip the banister, putting the shopping bags down on the way back from the market to catch your breath, waking up at night struggling to breathe… Chronic obstructive pulmonary disease, or COPD, affects not only the lungs but also a person's daily life, self-confidence and mood. When people talk about COPD and mental health, the first thing that usually comes to mind is the fear of not being able to breathe. Breathlessness can heighten anxiety, and anxiety can heighten the sensation of breathlessness; caught in this vicious circle, the person gradually moves less, goes out less and becomes more alone. In this article I look at the relationship between breathlessness and anxiety, the patient's inner world and how the family can stand by them through this process. On matters such as medical treatment, oxygen use and exercise, the recommendations of your chest physician always come first.

Why Does COPD Take Such a Toll on Mental Health?

Breathing is the most basic sign that a person is alive. Every moment in which the breath is not enough is experienced as an alarm at the level of the body. That is why it is not an exaggeration or "just imagination" for someone who is breathless to feel afraid; it is an entirely understandable reaction.

In COPD, what makes things hard is not only the breathlessness itself. The illness often progresses slowly, and what the person can do diminishes step by step. Someone who used to walk to the mosque, tend their garden or take their grandchild to the park now finds these things difficult. These losses may look small, but when they pile up they can give rise to deep grief and a sense of worthlessness.

Then there is the matter of guilt and shame. Because the link between COPD and smoking is widely known, many patients hear blaming messages both from their own inner voice and from those around them: "I told you so, you never gave up." Such remarks do not motivate the person towards treatment; on the contrary, they can lead to shame, hiding and not asking for help. Whatever the cause of the illness, someone who is struggling to breathe today needs support, not blame.

The Cycle Between Breathlessness and Panic

Breathlessness and anxiety are two processes that feed each other. The cycle usually works like this:

1. The person makes some effort or meets a trigger such as air pollution or cold weather, and feels their breathing tighten.
2. The mind immediately produces a catastrophic scenario: "I won't be able to breathe, I'm going to suffocate."
3. This thought sets off the body's alarm response; the heart speeds up, the muscles tense, and breathing becomes shallower and faster.
4. Faster, shallower breathing increases the feeling of breathlessness, which in turn makes the fear grow.

Over time, someone caught in this cycle starts to avoid any activity that might make them breathless. They stop walking, stop climbing stairs, stop visiting people and even begin to put off having a bath. Avoidance brings relief in the short term; but in the long term it can lead to a loss of fitness, so that breathlessness comes with less effort and the fear grows larger.

Let's say a sixty-five-year-old retired civil servant felt his breathing tighten one winter morning while walking to the bus stop, and sat at the stop for a long time trying to recover. From that day on he stopped taking the bus, then stopped going down to the town centre, and in the end stopped going out even to the front of the apartment block. Each time he gave something up, he felt relief in that moment; but within months his world had shrunk to the size of his living room. This example shows how quietly and slowly avoidance can advance in the psychology of a COPD patient. Often neither the patient nor the family notices when this shrinking began.

It is not always easy to tell panic attacks apart from episodes of breathlessness caused by the illness. For this reason, when your breathlessness increases or gets unusually worse, follow the action plan your doctor has given you; if you think it is an emergency, do not hesitate to call 112 (emergency services). If you would like to learn about the general symptoms of panic attacks, you can look at the article on panic attack symptoms; but assessing your own situation is always your doctor's job.

The Inner World of Someone With COPD: Common Feelings

Every patient is different; but there are certain feelings that people living with COPD often mention:

• Being constantly on guard: Calculating the weather, the number of stairs and the distance to a destination in advance.
• Fear of becoming dependent: The thought "I'll end up relying on my children" is very wearing, especially for people who have carried the family all their lives.
• Shame at being visible: Going out with an oxygen device, having a coughing fit in public, having to stop to catch their breath.
• Loneliness: Meeting friends, weddings and Bayram (religious holiday) visits gradually becoming fewer.
• Joylessness: Things that once gave pleasure now feeling like a burden.
• Irritability: Losing one's temper quickly when the body cannot keep up, snapping at those closest.

These feelings can at times become intertwined with symptoms of depression. If there is long-lasting low mood, a marked change in sleep and appetite, or an inability to enjoy anything, be sure to share this with your doctor.

Nights can be especially hard too. During the day there are tasks, visitors and the television to distract you, but in the silence of the night the sound of your own breathing becomes louder. The fear that breathing will tighten once you lie down delays falling asleep; lack of sleep, in turn, increases tiredness and anxiety the next day. If your sleep pattern is markedly disrupted, it is important to talk to your doctor about both the physical and the emotional causes.

COPD by Age and Stage of Life

COPD is mostly diagnosed in middle age and later; but the stage of life the patient is in has a marked effect on the psychological burden they carry.

The middle-aged patient who is still working

For a shopkeeper, driver or factory worker in their fifties, a COPD diagnosis comes together with worries about making a living. When giving up work seems unthinkable amid the rising cost of living, the body's inability to keep up with the pace of the job creates great tension. In this period it is important to make room for the person to keep the responsibilities they can manage and for reasonable changes to be made to their working arrangements, so that they do not feel "useless".

Retirement and older age

For an older patient, the greatest loss is often autonomy. Not being able to go to the shop alone, not being able to play for long with the grandchildren who come to kiss their hand at Bayram, not being able to make it to Friday prayers can damage their dignity. In this period the family needs to approach the patient without taking their decisions away from them, protecting what they are still able to do.

Children and grandchildren at home

A child who sees their grandmother or grandfather struggling to breathe may be frightened. The sound of the oxygen device, coughing at night or an evening when an ambulance had to be called all grow larger in a child's mind when they are not explained. Giving a short, calm explanation suited to the child's age ("Grandad's lungs get tired, and this machine helps him breathe") is usually more reassuring than staying silent.

How Should the Family Treat Someone With COPD?

As family members witness episodes of breathlessness, they become anxious themselves. This anxiety can sometimes turn into overprotection, sometimes into anger and sometimes into blame. The fictional examples below can help you see the difference in attitude.

Sentences you might do well to avoid:

• "It's all because of those cigarettes, how many times did we tell you?" (Blame about the past adds to today's burden.)
• "Calm down, you're exaggerating, there's nothing wrong." (Dismissing the patient's bodily experience leaves them alone.)
• "Don't you get up at all, we'll do everything." (Removing movement entirely can weaken both the body and morale.)
• "Can you really go to a wedding like this? We'll be embarrassed." (It deepens shame and increases social isolation.)

Sentences you could try saying:

• "I'm here, there's no need to hurry, get your breath back."
• "Shall we walk to the shop together today, nice and slowly?"
• "If you want to go to the wedding, let's make a plan where we only stay a short while."
• "I can see you're frightened; whatever happens, I'm with you."

During an episode of breathlessness, a calm tone of voice, slow movements and short sentences help the patient feel safe. Rushing around the room in a panic, asking lots of questions at once or crowding around the patient, on the other hand, raises anxiety. Preparing an "episode plan" for home in advance with your doctor increases both the patient's and the family's sense of control: what to do in which situation, and when to contact the doctor or call 112, should be written down and kept on the fridge door.

Caregiving spouses and adult children also grow tired in this process. Sleeping while listening to the patient's breathing at night, leaping out of bed at every cough, rushing between the hospital and the pharmacy can lead to burnout over time. While trying to understand the psychology of a COPD patient, the family also needs to look after its own limits and share tasks among siblings and other relatives so that long-term care can be sustained.

What helps someone who is short of breath most is often a person who can stay beside them without panicking.

Practical Everyday Tips for Someone With COPD

The suggestions below do not replace medical treatment; alongside your doctor's recommendations, they are small steps aimed at easing the emotional load.

• Discuss breathing techniques with your doctor. Chest medicine teams and pulmonary rehabilitation programmes can teach breathing techniques suited to COPD. You can find information on general breathing practices for anxiety in the article on breathing exercises for anxiety; but be sure to ask your doctor or physiotherapist which technique is right for you with COPD.
• Break activities into parts. Doing tasks such as bathing, preparing a meal or taking a short walk with rests in between strengthens the experience of "I can do it slowly" rather than "I can't do it".
• Notice catastrophic thoughts. When the thought "I'm going to suffocate" comes, reminding yourself that it is a thought and that you have come through similar moments before can slow the rise of anxiety.
• Protect your connections. Short visits instead of long ones, tea with one or two friends instead of a crowd, and video calls can reduce loneliness.
• Adapt the activities you enjoy. Someone who loves gardening can tend pots on the balcony; someone who misses chatting at the local tea house can invite their friends over.

When Should You Seek Professional Support?

Living with COPD brings episodes of sadness and anxiety from time to time. However, support from a mental health professional may be helpful in the following situations:

• Panic attacks becoming more frequent and the person avoiding leaving the house altogether
• Low mood, hopelessness and an inability to enjoy things lasting for weeks
• Refusing to take part in treatment or pulmonary rehabilitation
• Sleep being markedly disrupted by anxiety
• The caregiving family member feeling burnt out, constantly tense or close to tears

If symptoms of depression or anxiety are prominent, talk openly about this with your chest physician; where necessary, an assessment by a psychiatrist may be important. At moments when you feel you want to die or thoughts of ending your life become intense, do not carry this burden alone; in an emergency, call 112 (emergency services).

How Is the Psychology of COPD Addressed in Therapy?

Psychological support does not change the medical treatment of COPD; but it can make the emotional side of living with the illness more bearable. Within cognitive behavioural therapy, work focuses on the catastrophic thoughts that accompany breathlessness, avoidance behaviours and restructuring daily activities. The person can learn to observe the sensations in their body and to approach them not with panic but with calmer attention.

Grief over losses, a sense of worthlessness and the fear of "being a burden" are also topics often discussed in therapy. For some patients, guilt about their smoking history remains a heavy load until a more compassionate view of themselves is developed. In sessions with family members, the focus can be on sharing the burden of care, softening communication and finding the balance between overprotection and neglect.

For people in whom anxiety and panic symptoms are prominent, work in the area of anxiety and panic can offer guidance. During periods when leaving the house is difficult, sessions can also continue online.

Frequently Asked Questions

How can a panic attack be told apart from breathlessness in someone with COPD?

This distinction is not always easy and should not be made alone. The safest way is to talk with your doctor about which symptoms may point to which situation and to prepare a written action plan. When you suspect an emergency, call 112.

What should be done if someone with COPD does not want to leave the house at all?

First, try to understand the fear behind this wish. Starting with short, planned and safe outings, such as sitting in front of the apartment block for a few minutes, can gently break the cycle of avoidance. It is important to set limits for movement and exercise together with the doctor.

Is it right to blame the patient for having smoked?

Blame does not improve the patient's present situation; it can increase shame and withdrawal. Supporting the patient in health steps such as stopping smoking is far more constructive than reminding them of the past.

What can you say to a patient who is embarrassed about using an oxygen device?

Listening without belittling their embarrassment is a good start. A sentence such as "This device gives you the freedom to breathe; we can go wherever you like together" can help them see the device as a help rather than a restriction.

• #copd
• #breathlessness and anxiety
• #family caregiver
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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