You might find after the diagnosis that you need more than your usual ways of coping. There is no best or right way of coping, but having a few different strategies may help you feel a greater sense of control and confidence. A coping toolbox is a set of strategies or ‘tools’ you can use to help you cope. Each persons toolbox will look different, but it’s useful to consider several strategies or tools for coping.
There is a lot of information to take in – and well-meaning family and friends may give you even more. Too much information may leave you confused about what to do. Instead, you may need information relevant to your situation or a way of dealing with the information you already have.
- Get organised: start a filing system for all your test results, information and records.
- Keep a diary: This may help you to kee track of appointments and highlight where information may be missing. This will also be a useful, accurate record in the future (especially if you are seeing different professionals in different locations).
- Involve other people: Ask people you trust to help gather and make sense of new information.
- Consider different sources of information: Look at websites, books and different organisations. Take care with information from the internet as some of it is unregulated and of poor quality.
- Ask questions: If you are unsure or confused about certain information, it can help to talk to your doctor. Write down your questions beforehand so you remember what to ask when you see your health care team.
- Take a close family member or friend to consultations: They can take notes to help you remember the details. If you are comfortable with it they can also ask questions.
- Find support: Some people join a support group as it gives them the opportunity to talk to other people in a similar situation. If you think a support group is not for you, there are other ways to connect with people.
After receiving a congenital CMV diagnosis, you will probably need to make several decisions. These could include the choice of treatment and early intervention therapy and how to involve your family and friends.
- Take your time – There is time to consider your treatment choices. Generally, people make better decisions – and have fewer regrets later – if they take time to gather information and think about the possible consequences.
- Get expert advice – Ask your health care professionals to explain the treatment options and the benefits and side effects of each. Social workers can also give you details about support services.
- Write it down – Organising your thoughts on paper can be easier than trying to do it in your head. Write down the aims of the treatment/therapy available.
- Talk it over – Discuss the options with those close to you.
- Expect to experience doubts – Being unsure does not mean you have taken the wrong path. Reassure yourself that you made the best decision you could with the information you had at the time. Asking yourself, ‘Did I make the right decision?’ is rarely useful. Also, decisions are not always final.
- Get a second opinion – Asking another specialist what they think can be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommendations or reassure you that you have explored all of the options. Specialists are used to people doing this. Your doctor can refer you to another specialist and send results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. Alternatively, you may decide you would prefer to be treated by the doctor who provided the second opinion.
Looking after yourself
A CMV diagnosis for your child can cause physical and emotional strain. Some days you may feel better than others. Looking after yourself can enhance your well-being and reduce stress during this time.
- Eat well: Eating well gives your body better fuel to help it cope with stress.
- Be active: Physical activity can lift mood, lower blood pressure, improve sleep and reduce stress. It is also an important way to manage fatigue – helping you to feel more energetic and less tired. Even a short daily walk can help.
- Make time for yourself: Even though life may be very busy, it is important to make time each day just for relaxation and enjoyment. Think about things you do (or have done in the past) that help you to relax and feel good.
- Sort out issues: Dealing with other sources of stress in your life such as financial problems, work-related issues, relationship concerns and family stresses may help you cope better going forward.
- Stay connected: Keeping in touch with the world through work, hobbies or time spent with family and friends may help you see a life outside of doctor appointments, treatment and early intervention therapy and provide a break from your worries.
- Tap into spiritual beliefs: Some people find meaning and comfort from their faith and spiritual practices. Others may experience spirituality more generally. A diagnosis may challenge the beliefs of some people and it may help to talk to a spiritual leader or pastoral care worker about your feelings.
- Recognise signs of stress and anxiety: In times of stress, your body releases adrenaline, your heart beats faster, your blood pressure goes up, your breathing is shallow and fast, your hands get sweaty, and your mouth gets dry. These natural responses help people deal with a crisis. For most people, these feelings settle, but for others they are ongoing.
Feelings you may experience
Shock and disbelief – it may take time to accept that your baby has a disability and some people may never accept the diagnosis.
Fear – it’s frightening to hear your baby could have or has a disability. Most people cope better when they learn more about the diagnosis and treatment options.
Distress – the diagnosis may cause you and your family members to experience high levels of emotional distress.
Sadness – feeling sad after your child has been diagnosed with congenital cytomegalovirus is common. If you feel continually sad or down for two or more weeks and are not enjoying or interested in your usual activities, or are unmotivated, talk to your doctor – you may be experiencing depression.
Anxiety – it’s natural to worry about what a congenital CMV diagnosis will mean for your baby in the future, and the impact the diagnosis will have on your family, work and other responsibilities, but looking far ahead may be unhelpful.
Anger – you may feel angry with health care professionals, your God, or even yourself.
Guilt and blame – it is common to ask ‘why my child?’
Loneliness – you might feel lonely and isolated if your family and friends have trouble understanding your child’s diagnosis or if you are too busy with appointments etc to be able to work or socialise with others and enjoy your usual activities.
Loss of control – being told your baby has congenital CMV can be overwhelming and make you feel as though you are losing control of your life.