Talking to loved ones about your diagnosis is not an easy task. The emotions you are feeling are most likely new and coping with the reactions of others can add more stress and anxiety. At first, it may feel easier to not tell some of your family members and friends, but it’s important not to isolate yourself as a result. Talking with loved ones will help you build a support network and allow them to support you when you need it most.
Preparing for the conversation
Before telling your wider social network about your diagnosis, it’s important to take some time to process your feelings first. If you are feeling overwhelmed and confused about your diagnosis when telling others, it can lead the conversation down an unexpected pathway. If possible, it may be helpful to educate yourself on your condition, your diagnosis, prognosis, and any proposed treatment or management plan prior to the conversation. Your loved ones will most likely have questions about your diagnosis and providing information can help them to understand what you are going through and how they can help. They may also have questions and you won’t know the answer to. Be honest about what you don’t yet know yourself so your loved ones are aware of the uncertainty that can come with a diagnosis. You can read more about processing your feelings around your diagnosis here.
Deciding who to tell
It can be helpful to start by making a list of people you want to tell in person such as your immediate family members and closest friends. You could then make a second list of other important people in your life that you would like to notify via telephone, email or have a family member or friend contact them with the news. Try not to feel guilty for not sharing your diagnosis with all your friends straight away. It is okay to focus on yourself and processing what you are going through as well as what lays ahead. There is no right or wrong way, it’s about finding what is most comfortable for you.
Other considerations
Decide whether it will be easier for you to tell people in groups or one on one. Sometimes having a family member tell people about your diagnosis may be easier and less stressful. Expect different reactions. People may not react the way you anticipate or think they “should react.” People have different ways of processing stressful news related to someone they care about. Some people may want to help, others will not offer right away, and others may go ‘missing’ for a while. This doesn’t mean they don’t care; it is their way of coping with your news.
Think about how much you want to share and what topics are too sensitive for you to talk about. If people say things or bring up topics that upset you, be ready to tell them you prefer to talk about something else.
Talking to your spouse or partner
If your partner was not with you at your appointment, you may want to find a private place to tell them. You could anticipate a strong emotional reaction as they will experience initial shock. Neither of you may have been in this situation before and you both will need to navigate new roles and responsibilities in your relationship as the person living with the condition and the person who will provide support. It may take time to work out a way forward. Do your best to tell your partner what you need. Clearly communicating each other’s needs will help prevent misunderstandings or feelings of frustration as you’ll be on the same page.
All couples want to have a successful relationship and going through periods of difficulties are a normal part of sharing your life together.
Facing the unknown about what lies ahead can make it hard to talk to your partner. Seeking support from a psychologist or relationship counsellor to discuss ways to approach such conversations can help you and your partner address the uncertainty or anxiety you both may feel.
Children/Grandchildren
Many parents instinctively want to protect their children and grandchildren from bad news. You might consider not telling them. Though your intentions might be loving, it is in everyone’s best interest to share your diagnosis. Children can sense when something is wrong. Avoiding telling them may extend their anxiety. If your children or grandchildren are young, talking with a professional such as a paediatrician, GP, social worker, or psychologist can help you decide on the best way to tell them.
Young children may be fearful their parents/grandparents will die and may ask questions about that. It’s good to acknowledge their fear and explain when someone they love is unwell, it can make them feel very scared. They may need a reminder that their loved one will be around to look after them for as long as possible and whatever happens, there will be plans in place to make sure they are safe and loved. They may also ask you questions which you don’t know the answers to, or you don’t want to answer straight away. Be honest and tell them you need to check or think about what they’ve asked, and you’ll come back to them. You could say something like, “That’s a really good question and I don’t know the answer and I would really like to know as well. So, I would like to talk to the doctor about it and I’ll let you know what they say”.
Schools
Schools encourage families to let them know of home circumstances that may affect a student’s schooling. Children may find it difficult to verbally express how they are feeling. Their behaviour may be more of an indicator. Telling their teacher or school guidance officer about a serious diagnosis at home may be helpful to offer additional support from the school’s perspective. They will be able to understand and address any changes in behaviour. Some families may choose to keep the information private, and ultimately it is a personal decision.
Teenagers
Teenagers living in a household with a parent with a serious lung condition may present its own set of unique challenges. At this age, they are transitioning from childhood to becoming an adult, and with this comes a new level of awareness and thinking. Teens may be torn between seeking independence but realising they need parental support and guidance. Finding practical help like opportunities for emotional expression and respecting they will process the impact of the diagnosis in their own way, is a great way of providing support. Offering the opportunity to be involved in your care can make them feel some degree of control. Don’t be afraid to ask them for help and accept it, even if it feels awkward at first.
At the end of the day
Be clear about what support you need. One day you may just need someone to listen, or on another day you may need something more specific like help to clean your house or cook meals. Because this is such a stressful and emotional time, it can be helpful to work with healthcare and support professionals such as a social worker, psychologist, GP, paediatrician or school guidance counsellor (where applicable) to get further support.
