Cardiomyopathy and emotional wellbeing

Having a long-term condition can cause many challenges. This can include the physical impact of the condition (such as causing pain or limiting activities), practical limitations (such as managing medication and side effects) and lifestyle issues (such as driving, work and leisure). It can also affect friendships, family dynamics, and intimate relationships.

A diagnosis can also have a significant impact on someone’s mental or psychological health. This can be for many reasons, which may include the following.

  • Loss of the life you were expecting and adjusting your expectations to life with a long-term condition. Some people describe this as a bereavement – the loss of the life they were expecting to have.
  • Limitations that a condition can place on your activities, including your social life and interactions with others. This may mean you feel excluded or isolated.
  • Feeling that you are now ‘unwell’ or are worried that people will see you as a ‘poorly’ person.
  • Concerns and worries about how the condition will impact you, now and in the future. This might include your health, being able to work, your family life and worries about your life expectancy.
  • Changes to relationships and family dynamics, particularly if you need to rely on others when previously you didn’t have to (for example, to drive you around, or do the shopping or housework).
  • The impact of, or on, any other medical condition or disability that you have.
  • For some, the condition may lead to developing a mental health condition such as anxiety and depression. For someone who already has a mental health condition, developing a long-term condition can have an impact on this, or can affect how an individual copes with their new condition.
  • People often strive to feel a sense of ‘normality’, which can be difficult with a condition that can cause great changes to their lifestyle.

Emotional wellbeing and cardiomyopathy

Our Cardiomyopathy UK survey asked for people’s thoughts and experiences about mental health and emotional wellbeing. We asked people with the condition to complete a survey, and also people who support someone with the condition (family, friends and carers). The following information is feedback from the survey and represents what people have told us. This may or may not be your own personal experience, and that of people around you, but it identifies some of the ways in which cardiomyopathy can affect emotional wellbeing, at what stages people felt it affected their wellbeing, and what would have helped them to cope.

Does having cardiomyopathy affect emotional wellbeing?

“My confidence has been shattered and I do not function as well as I would normally.”
Individual with cardiomyopathy

 

Most people, both with the condition and supporting someone with the condition, felt that cardiomyopathy has some impact on their mental health and emotional wellbeing, either some or most of the time. The impact makes parts of life more challenging.

“I have all the tools as a coach to stay emotionally well and practise those. Despite all of these tools, the medical aspects of the condition make staying positive and emotionally well a massive challenge.”
Individual with cardiomyopathy

For some people with cardiomyopathy, the impact of the condition on their emotional wellbeing can be as great, if not greater, than the impact of living with the medical condition.

“It has affected me in the past for several weeks, a few months at a time.”
Individual with cardiomyopathy

Emotional wellbeing and the course of cardiomyopathy

For many people, when their cardiomyopathy is well-managed it has less impact on their emotional wellbeing. However, there may be times where their condition changes, and this can have a greater impact on emotional wellbeing. Some people cope well until their condition changes, and this can throw everything up in the air again, possibly bringing back feelings of worry and uncertainty.

Although everyone’s experience will be different, as the course of their condition will be unique to them, the following are examples of when cardiomyopathy affects emotional wellbeing, and when people feel they need support.

When symptoms first start to happen - this can be a worrying time, particularly when symptoms can come and go. Symptoms of a heart condition, such as palpitations and feeling very tired, can be very worrying.

At the time of diagnosis - for some people a diagnosis may be a relief: they know what the condition is and that treatment can be started. However, for others a diagnosis can be a huge shock and very upsetting. It can be a time of very mixed emotions, and can be confusing or worrying. It can also be difficult to take in new information at this time, which can add to any worry or confusion someone is feeling.

“When I was first diagnosed I took it hard… Basically I turned in on myself,
I wouldn’t talk to anyone about it.”
Individual with cardiomyopathy

When the condition or its symptoms get worse - when a condition is stable it may start to reduce its impact on someone’s life as they come to terms with it. When this changes, it can bring up worries. Sometimes it can feel like being diagnosed all over again, or it can bring up new feelings and concerns about what these changes mean.

When a device is needed and implanted (an ICD* or pacemaker) - needing to have a device implanted can be difficult. Devices are used to help the heart work, improve symptoms and reduce the risk of complications. However, needing to have a device can often mean facing the reality of the seriousness of the condition. And having a device can cause anxiety: some people are extremely worried that the device will go off at some point, particularly an ‘inappropriate shock’ from an ICD (where the device gives a shock by accident). 
*A form of treatment that shocks the heart if it is in a dangerous arrhythmia.

“Recently I received my first shock from my ICD, there was nobody to talk to
who understood my emotional feelings…”
Individual with cardiomyopathy

When heart failure symptoms develop - many people with cardiomyopathy develop symptoms of heart failure: where the heart struggles to meet the demands of the body. Although there are many effective treatments to help someone with heart failure, the term ‘heart failure’ itself can be worrying as ‘failure’ sounds very scary and as if the heart is about to ‘stop’. 

“My heart had not ‘failed’, it still beats, still pumps, though not quite as effectively
as I would like it to have done.”
Individual with cardiomyopathy

When genetic testing is considered - cardiomyopathy is often a genetic condition: caused by an altered or ‘mutated’ gene. Where it is genetic, it can be inherited (passed from parent to child) and so often runs in families. For this reason, if someone’s cardiomyopathy is genetic it is recommended that close (first degree) family members (parents, siblings and children) are tested to see if they have the same genetic mutation, and therefore could develop cardiomyopathy. Having genetic testing can be a worrying time, and people can have conflicting feelings about it. Some people feel scared or guilty that they might have passed on the gene to their children, and worry about what this means. Genetic testing also looks at the family history and whether any family members have the condition, and this can also be upsetting.
Read more about genetics and genetic testing.

What might help at these times?

Both people with the condition, and those supporting them, felt that talking to someone with similar experiences, sharing experiences in a group, and seeing a counsellor, would be helpful during these times. As conversations can be difficult to start, speaking to someone who shares similar experiences can be particularly helpful. 

Talking about mental health with healthcare professionals

“Healthcare professionals should take a holistic approach and ask about emotional wellbeing at appointments, not wait until there is a problem.”
Individual with cardiomyopathy

Most people hadn’t started a conversation with their healthcare professional about the impact of their condition on their emotional wellbeing. And for most people, their healthcare professionals have never brought up the subject.

For people with the condition, often this is because appointments are too short to raise the subject or they felt embarrassed to. Having the right sort of relationship with a healthcare professional, or if the professional brought up the subject, would help people to feel able to talk about it. If people do start a conversation about this, this is usually with their GP, rather than a nurse or cardiologist.

“I feel I should not have a problem so feel guilty that I do and should not bother
the busy health professionals.”
Individual with cardiomyopathy

Family, friends and carers don’t start a conversation because they don’t want to talk about their own feelings in front of the person with the condition, or they feel guilty having these feelings when they don’t have the condition. Having the right sort of relationship with a healthcare professional, or having an appointment to focus on their own needs, would help them feel able to talk about this.

“I am afraid to mention this to anyone in my work life or to my doctor. 
I also find it very difficult to talk about.
Carer of someone with cardiomyopathy

Talking to family and friends

Although people with the condition often speak to partners or spouses, and to friends, about their emotional wellbeing, almost 1 in 3 haven’t spoken to anyone about it. This is similar for family, friends and carers, with many speaking to partners and friends, but 1 in 3 haven’t spoken to anyone about this. This is because people are embarrassed to bring up the subject or they don’t know how to start the conversation.

How should support services be offered?

Although their needs change over time, most people said that they would like support services to be offered. We asked what sort of support people would like to be offered around their emotional wellbeing.

People with cardiomyopathy would prefer peer-support by speaking to someone with similar experiences, to share experiences within a group and to meet, informally, face-to-face. They also prefer online support such as through social media.

“The thing that really helped me was talking to another person who had been through the same experience. She reassured me that I was not alone in having the psychological struggles.”
Individual with cardiomyopathy

Those supporting someone with cardiomyopathy would prefer to speak to someone with similar experiences, to meet face-to-face informally, to attend a course, and to speak to a counsellor.

“At different times, different things are needed, but it would be good to know they can
be accessed in different ways.”
Carer of someone with cardiomyopathy

Find out more about how we can help support you.
Read more information about practical help and emotional support for family, friends and carers.

Looking after your emotional wellbeing

Like our physical health, there are often things we can do to support our emotional health and wellbeing. This may be helpful for anyone, not just someone with a long-term condition. The following are some suggestions of ways to look after your emotional health and helping you to feel a sense of control over your life.

It may help to talk about how you are feeling with someone you trust and who will understand. This might be a family member or friend, a healthcare professional, or you might like to talk to someone from a support group, helpline or through online support services.

Look after your physical health

Looking after your physical health can have a positive impact on your emotional health. Eating a healthy, well-balanced diet, helps to keep your body healthy and can help with weight management. This can help with some of the physical symptoms of cardiomyopathy as it reduces extra pressure on the heart. 

Exercise can help improve overall health and fitness, and can reduce the impact of some physical health conditions. It is also recognised as helping with mental wellbeing by reducing stress and depression. It can also be beneficial for the heart by improving blood circulation and strengthening the heart muscle. Some people with cardiomyopathy are concerned about the type and level of exercise that is safe for them.
Read more about cardiomyopathy and exercise.

Take time for yourself

Taking ‘time out’ to look after your emotional wellbeing might feel like a strange thing to do, or it might feel self-indulgent. But taking time to have a break, do something you are good at and enjoy, and get away from your normal routine can have positive effects on your mental health and reduce stress. Doing something you enjoy helps with self-confidence as well as giving you time to focus on something positive. This might be a few minutes a day to sit somewhere quiet and meditate, doing a regular hobby, to a break away from home.

Be kind to yourself

It can be all too easy to tell ourselves ‘pull yourself together’ or to ‘stop feeling sorry for yourself’ when we are feeling low or struggling to cope. But often the feelings we are having are a natural and automatic response to what is happening. Telling ourselves we shouldn’t be feeling this way often has the opposite effect to what we want, making us feel worse because we feel that we ‘cannot cope’.

“Most people just think that you’re in a bad mood for some reason and expect
that you can just snap out of it... It’s not that simple.”
Individual with cardiomyopathy

Sometimes it is helpful to think ‘what would I say to a good friend, if they were feeling this way?’ Often we are kinder to those we love than to ourselves. Treat yourself as you would a friend. Acknowledging your feelings as natural and not a ‘weakness’ may allow you to move forward and refocus on positive ways of coping with these feelings.

Ask for help

As cardiomyopathy can be a ‘hidden’ condition (it is not obvious who has it by looking at them), people may not understand the symptoms someone with cardiomyopathy experiences. People might ask “how are you?” but may not be prepared to hear how someone actually feels. Sometimes it is easier to just say “I’m fine”. 

It can be difficult to ask for help, whether it is from a friend or family member, or from a health professional. It can feel like admitting that we are ‘not coping’ and that it is a weakness. But asking for help can be a strength and can be positive: a sign that we acknowledge how we feel, and want to develop ways to cope with what we are feeling. 

The Mental Health Foundation (opens new window) has several useful resources.

Find out more about charities that provide detailed information on mental health conditions, services and support.

When to look for support

If you have cardiomyopathy, or you are supporting someone with it, the right time to look for support depends on you and what you need. There may be times when you feel that you don’t need to look for support, either because you have networks in place already, or you don’t need any additional support at this time. But there may also be times when you feel the need for support deeply or urgently.

As your need for support may change over time, so might the type of support you would find helpful. This may depend on what is happening with your condition, and what coping strategies you have in place. 

If and when you need it, there are a variety of different services available. This could be anything from having time out with a friend over lunch, meeting and sharing experiences in a support group, signing up to a meditation or self-management course to finding a counsellor. Some are things you can do yourself including help you can ask for and services you can sign up to. Others are services that you may need a referral to access, such as from your GP. Find out more about these services.

Please note: if you are concerned that you may be experiencing a mental health condition, contact your GP or specialist (if you have one) to talk about this, as additional treatments or therapies might be appropriate.

“In the early years after diagnosis everything is up in the air as no one can tell you about your future... you lie awake a lot... then at some stage you realise: continue to live and enjoy life and make your families memories of you strong and good…”
Individual with cardiomyopathy

 

©Cardiomyopathy UK. October 2017