Pacemaker Psychology: Learning to Trust Your Body Again

How does pacemaker psychology work? Advice on anxiety after a pacemaker or ICD is fitted, listening to your heart, avoidance and support from family.

The operation went well, and at your check-up the doctor said, "The device is working perfectly." Yet when you lie down in bed at night, you cannot fall asleep without placing your hand on that small bump on the upper left side of your chest. If your heart speeds up for a moment, you think "Has the device broken?"; you hold your breath as you walk through the security gate at the supermarket. Your heart rhythm is now supported by a device, and this creates both reassurance and a strange sense of unfamiliarity. Pacemaker psychology is less about the job the device does in the body than about the relationship a person builds with this new situation. In this article I look at the anxiety experienced after a pacemaker or an implantable defibrillator (ICD) is fitted, the process of learning to trust the body again, differences by age, and how the family can offer support. Your cardiology team is your main source for all medical questions about your device and the rules for daily life.

What Is Pacemaker Psychology? The Emotional Side of Living with a Device

Pacemakers and shock devices (implantable cardioverter-defibrillators) are devices fitted to regulate the heart rhythm or to intervene in dangerous rhythm disturbances. Medically, for many people they are a step that makes life easier and increases safety. However, having a device placed inside the body, right next to the heart, is also a significant psychological experience.

In our culture, the heart is not just an organ; it is seen as the centre of feelings, love and life. Expressions such as "my heart is in the right place" or "my heart was broken" show this. That is why "entrusting" the heart to a device can stir a deep sense of vulnerability in some people.

Common feelings after the device is fitted include:

• Relief. For people who have lived in fear for a long time because of fainting, extreme fatigue or a rhythm disturbance in particular, the device is a great reassurance.
• Unfamiliarity. The feeling "There's something in my body that isn't mine" is common, especially in the first weeks.
• A sense of dependence. The thought "Now I'm dependent on a machine" can shake the sense of independence.
• Vulnerability. Someone who previously felt healthy may struggle to accept that their heart is "in need of protection".

It is entirely natural to feel these emotions together. Relief and anxiety do not rule each other out. Many people build a friendlier relationship with the device over time by giving it a name or calling it "my guard" or "my helper"; others prefer never to mention it at all. Both are different paths through the process of adjustment.

Listening to Your Heart: Being Over-Alert to the Body

Many people who have a pacemaker fitted start to monitor their body more closely than ever before. Up to a point this attention is healthy, but over time it can turn into a cycle that feeds anxiety.

This cycle usually works like this:

1. The person notices a small change in their heartbeat (speeding up, a skipped-beat feeling, a twinge in the chest).
2. The mind immediately interprets this as a sign of danger: "The device isn't working", "Something's happening".
3. Anxiety rises; anxiety in turn speeds up the heartbeat and changes breathing.
4. These bodily changes feel as though they "confirm" the original fear.
5. The person checks their pulse, feels the device area, searches online; they feel relief for a short while, but the anxiety returns more quickly next time.

Constantly checking heart rate on a smartwatch, listening to the heart through the night and frequently touching the device area are typical parts of this cycle. You can find more information on how health-related anxiety works in general in the article on health anxiety.

There is an important distinction here: some symptoms genuinely need medical assessment, and the warning signs your cardiology team gives you should always be taken seriously. However, a need to keep checking situations the team calls "normal" is often a sign of anxiety. Clarifying with your team, in writing, which symptoms you should contact whom about reduces the uncertainty of "Should I call or not?"

Is it anxiety or is it my heart?

Many people can mistake panic attack symptoms for a heart problem, because palpitations, tightness in the chest, shortness of breath and dizziness can occur in both. For someone with heart disease, it is hard to make this distinction alone, and it should not be attempted. Assessing symptoms is the doctor's job. However, it is important to know that recurring attacks that cannot be explained medically may be linked to panic; for details on panic attacks, you can look at the article on panic attack symptoms.

A Particular Anxiety for People with an ICD: "What If It Shocks Me?"

People who have a shock device (ICD) fitted may experience a different form of anxiety from those with a pacemaker. These devices can deliver an electric shock to the heart when they detect a dangerous rhythm disturbance. This is a life-saving function, but the shock itself can be sudden and unexpected.

People who have experienced a shock may describe the following afterwards:

• Reliving that moment in their mind again and again
• Avoiding the place, time or activity where the shock happened (for example, not going into the garden if the shock happened while gardening)
• Living on alert as if it could happen again at any moment
• Being afraid of being alone

People who have never had a shock may also carry the worry "What if it happens one day?" These worries can lead a person to narrow their life more and more even though they are medically safe. After a shock, talking through what happened in detail with the cardiology team and understanding why and how the device works increases the sense of control in many people. If the shock left a traumatic mark, getting psychological support is also important.

Avoidance and a Shrinking Life

One of the most common difficulties in pacemaker psychology is the gradual increase of avoidance behaviours. The person starts to keep away from everything they think might "strain" their heart.

This avoidance may include:

• Avoiding walks, climbing stairs and light exercise
• Not going to crowded places, weddings or holiday visits
• Not staying at home alone, not going out alone
• Not travelling, not flying
• Not playing with grandchildren, giving up housework entirely

Some restrictions may be medically necessary; these are set by your doctor. However, if you are also avoiding activities your doctor has allowed because of fear, this avoidance weakens both body and mind over time. Inactivity lowers fitness, social withdrawal increases loneliness, and the person starts to feel "sicker" than they are.

In this situation, small, gradual steps work. For example, a fictional person might first walk to the end of the street with their spouse, a few days later as far as the local park, and after a while take a short walk alone. Cardiac rehabilitation programmes can be a valuable opportunity to relearn movement within a safe framework; you can ask your team about this.

Protecting your heart does not mean never using it; it means learning to trust it again, safely.

Pacemaker Psychology by Age: Child, Teenager, Adult and Older Person

Although pacemakers and shock devices are most often fitted in later life, they can also be used in children and young people because of congenital heart disease or inherited rhythm disorders. Each age has its own particular worries.

In children

Young children usually perceive the device through their parents' attitude. If the parents are very anxious, the child may also start to see their body as something fragile and dangerous. Giving the child an age-appropriate explanation such as "There's a little helper inside your heart that helps it", and processing the experience through games such as "fitting a pacemaker" to a doll, can help. It is also important for the school and the teacher to be informed in line with the doctor's recommendations.

In teenagers

For young people, the device brings issues such as body image, sport and being different from peers to the fore. The scar or bump on the chest can lead to embarrassment in settings such as the beach or the swimming pool in summer. The limits set by the doctor on taking part in PE lessons and sports can feed the young person's feeling "I'm not normal any more". It is important to make room for the young person to talk to their own doctor and ask their questions directly.

In adults

Working adults may have worries about returning to work, driving, parenting and daily responsibilities. Because the rules and limits on these matters vary depending on the type of device and the person's situation, they should be discussed with the doctor. Adults often hide their anxiety, saying "I mustn't frighten my family"; this increases their sense of loneliness.

In older people

In older patients, the device may be perceived as a concrete sign of ageing and a weakening body. The thought "I'm finished now" or the fear of being a burden to their children is common. For an older patient, keeping up their daily routines and continuing to go to the mosque congregation, the local coffee house and neighbours' homes is important for both their physical and emotional wellbeing. The article on depression after a heart attack can also offer guidance on the symptoms of depression that may appear after a heart attack or heart disease.

How Can the Family Offer Support?

The family's anxiety can easily magnify the anxiety of the person with the device. Overprotection, done out of love, can make the person feel more fragile.

• Things to say: "Your doctor has allowed walking; if you like, let's start together." / "You can tell me when you're worried, and we'll ask the team together." / "How are you feeling today?"
• Things not to say: "Don't lift anything at all, something will happen to your heart." / "You're not the same as before; sit down and rest." / "Don't hold the phone near that side, the device will break" (unverified warnings).

The family learning information about the device together with the person, from a reliable source, that is, the cardiology team, both reduces unnecessary fears and ensures they respond correctly to genuine warning signs.

When Should You Seek Professional Support?

Experiencing some anxiety in the first weeks after the device is fitted is to be expected. However, support from a mental health professional can be helpful in the following situations:

• Checking the pulse and body taking up a large part of the day
• Completely avoiding activities the doctor has allowed, because of fear
• Recurring memories, nightmares or intense alertness after a shock
• Sleep being seriously disrupted
• Prolonged hopelessness, lack of motivation, withdrawing from social life

If hopelessness turns into thoughts of death or a wish to end your life, do not carry this alone; in an emergency, call 112 (emergency services). If depressive symptoms are marked, an assessment by a psychiatrist may also be important; for people with heart disease, this assessment needs to be carried out in cooperation with the cardiology team.

How Is Anxiety After a Pacemaker Addressed in Therapy?

Psychological support does not interfere with the device's medical function, but it can help improve the relationship a person builds with the device and with their body. Cognitive behavioural therapy is one of the approaches frequently used for health anxiety and for the anxiety that accompanies heart disease.

In therapy, the way bodily sensations turn into catastrophic scenarios is noticed, constant checking behaviours are gradually reduced, and avoided activities are gradually returned to, within the limits the doctor has allowed. If there are traumatic symptoms after a shock, these are also addressed separately. Breathing and relaxation exercises can be taught to calm the body's anxiety response. For support with anxiety and panic symptoms, you can find information on the anxiety and panic page. For people who find it hard to leave home, sessions can also take place online.

Frequently Asked Questions

Since my pacemaker was fitted, I keep listening to my heart; is this normal?

Increased attention to the body is quite common in the first weeks. However, if this attention does not decrease over time, restricts your daily life and keeps you constantly anxious, health anxiety may have developed. In that case it is helpful to talk both to your cardiology team and to a mental health professional.

My ICD gave me a shock once, and I haven't been able to go out since. What should I do?

This is a very understandable reaction; a shock can leave a traumatic mark in some people. First, talk to your cardiology team about the cause of the shock. Then, trying to go out in small steps to stop the avoidance from growing, and getting psychological support if needed, will help you regain your confidence.

My family won't let me do anything; how can I talk to them?

You can start by saying that you understand your family's worry. Then suggest learning together which activities your doctor has allowed. Taking family members along to a check-up appointment ensures the information comes from the same source and reduces unnecessary restrictions.

I feel uncomfortable because of the scar and bump on my chest; will this pass?

Getting used to visible changes in the body can take time; many people eventually come to accept the scar as part of what they have been through. During this process it is important to notice any need to hide the scar or to examine it constantly. Ask your team your medical questions about the scar and the device area; if the feeling of embarrassment continues for a long time, talking about it with a professional may help.

• #pacemaker
• #ICD
• #health anxiety
• #heart disease
• #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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