Think of your illness as a companion not an enemy and take control, says nurse specialist Joanne McOsker
The initial diagnosis of cardiomyopathy, which can often be unexpected, can be distressing and can have a profound psychological impact on patients. Worries about the future create unique social and emotional issues for patients and their families too. Cardiomyopathy also presents patients and their families with a lack of predictability which may make living with the condition more challenging.
The anxiety of an uncertain future combined with the isolation of dealing with an uncommon condition can cause natural feelings of fear, anger and sadness. There may also be substantial feelings of guilt involved in families for having transmitted the gene and disease to children. Changing roles in family, work and social situations resulting from a person’s illness can create additional adjustment problems for everyone involved. The loss of self-image and identity a person had before becoming sick is perhaps the most difficult of transitions and can create feelings of helplessness, hopelessness and damaged self-esteem.
Coping with these issues can be overwhelming. When emotions like this persist for months on end, or begin to overwhelm us, they can merge into treatable medical diagnoses such as anxiety and depression. Over time most people are able to come to terms with the diagnosis and can begin to deal with these normal reactions. Different people cope in different ways, and some ways of coping are more successful in promoting a person’s emotional well-being and psychological adjustment than others. Effective coping strategies depend on your personality, your current life situation and how you have coped in the past. Many of the goals and challenges are personal to you and are dictated by the nature of your illness and the medical treatments. Coping is a process that goes on over months or even years, and patients use different strategies at different times, depending on the stage of their illness.
There are several things you can do to help get through these difficulties and to cope better, enabling you to feel more energetic and resilient.
Life management tips:
♥ Establish a good relationship with your nurse or doctor who will provide support
♥ Allow yourself to feel and express your feelings
♥ Conquer feelings of guilt. The disease is caused by nature and most likely not by behaviour
♥ Allow yourself to grieve for what you have lost
♥ Spend quality time with family and friends and keep lines of communication open so that everyone’s needs can be addressed and met in the best way possible
♥ If additional support is required, professional counselling can help
♥ Join your local cardiomyopathy support group to seek the advice of families who have dealt with a similar diagnosis. This can be encouraging and comforting
♥ Recognise the limits in your life and set realistic goals
♥ Learn to adapt, make substitutions and modifications so that you can still participate in fulfilling activities. Do something fun!
♥ Learn to value your own company, become your own best friend and find your self worth based on inner strengths rather than on what you do
♥ Take care of your body by following a healthy diet, mild exercise, and appropriate rest. Listen to your body. It will tell you what it needs. Pamper and nurture yourself with things that are enjoyable for you
♥ Eliminate stressful situations or learn how to handle them
♥ Educate yourself as much as possible about your condition and take an active role in your treatment. This will help you regain a sense of control and improve self-esteem
♥ Let go of expectations of others and society. Understand that society’s definition of what’s normal no longer applies. Do what you need to do for yourself
♥ Make peace with your illness. Try to think of your illness as your companion instead of your enemy. Learn to flow with it rather than resisting it
♥ Maintain a positive mental attitude
♥ Realise what life still brings you
♥ Enjoy every day
Living with cardiomyopathy is a lifelong process that will require ongoing review of every day and each situation. It is important to understand and accept that the nature of your condition may be unpredictable, interfering and erratic. Learn to expect the unexpected and make adjustments accordingly as you go through periods of exacerbation of symptoms and periods of improvement.
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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