When diagnosed with a life-changing illness, it affects both you and your loved ones. Everyone will react to your situation in their own way. How do you manage their reactions while also sharing your thoughts, wishes and needs so that they hear you?
Whether you're sharing the first news of your diagnosis or communicating the day-to-day management of your condition, it's understandable that sharing the details of your diagnosis with loved ones is tough.
Sharing news of your diagnosis
- When you're first diagnosed with a life-changing illness you may want to tell a close family member or friend and let them pass on the news to others when you're ready.
- You may want to call a family gathering and tell your loved ones all at once, allowing them to collectively support you and each other.
- You also may want to tell your loved ones one at a time, through intimate chats that allow you to share more deeply.
- Just as it was important to discuss your illness with your family when you were first diagnosed, it's essential to share how your illness progresses, and even the fact that you are seriously ill. So, communication with your loved ones will be an ongoing process.
- Keep in mind that it's normal for loved ones to react in different ways from feeling shocked to denial to sadness, anger and fear.
- If you have a doctor or anyone else involved in assisting you (for example, a counsellor, social worker or psychologist), you could ask them to be present to answer questions your loved ones may have.
- Your loved ones will want to do all they can to help you, so let them. Think about areas where you need help - whether it's to clean the house, getting your groceries, preparing your meals, driving you to medical appointments, or anything you feel is practical and doable. Allow your loved ones to take part in getting these things done.
It's important to share your wishes around your healthcare with your loved ones too
Sharing your wishes around your healthcare will help your support team understand your needs and ensure that the care you receive is in line with what you want. You may also want to capture your wishes around how you want your illness managed in the short- and long-term formally through an advance directive.
Keep in mind that your loved ones may struggle to cope with the thought of one day being without you. Lean on your healthcare team to assist you in helping them deal with any efforts to bed down your wishes for long-term care.
You may want to rope in your doctor, social worker or counsellor to assist you with making decisions about bringing in palliative care and support as early as possible in your healthcare journey. Keep in mind that while palliative care was once associated with end-of-life care, this form of care has today evolved to be relevant at every stage of a healthcare journey, including the outset of a life-changing diagnosis
How to talk to children about your serious illness
When talking to young children about your illness, they may act out (for example, throw tantrums or misbehave, while older children may completely withdraw). This is why you need to consider professional help when sharing any news around serious illness with loved ones.
Everyone is going to react differently to the news and the best way to enable them to support you at this difficult time is through open communication. This involves both verbalising and listening, and not just with your ears, but also listening to body language and other emotional cues.
Children can pick up when something is wrong, and there's no way you can protect them from reality, regardless of how old they may be. They also seem to be less anxious when they know what is going on. A lack of knowledge may fill their lives with uncertainty and may increase their fears of the unknown.
Break the news in a gentle, age-appropriate way to enable them to try to process and understand what is happening. Empower them by letting them know that nothing has changed and that you're still and will always be their mom, dad or grandparent. Tell them what they can do to help - whether it's to hug you or cuddle or be at your side. Make sure structures are in place to enable them to be heard and that teachers and schools know about the situation. Hopefully, this will also give you some form of closure and some peace of mind.
Harvard Health offers the following tips:
Talking to your children
- Make sure you and your partner are on the same page
- Ensure they understand. Consider simple, straightforward explanations for younger children. Adolescents will want to know more.
- Ensure that you give them your undivided attention.
- Always be honest and answer their questions, no matter how difficult they may be.
- Reassure them that what's happening to you is not their fault.
- Let them know what may happen next.
- Encourage them to verbalise how they are feeling.
- Reaffirm your love for them and the fact that they will always be looked after and loved.
You may consider chatting to your paediatrician if you are not certain on what level of information to share. If you have difficulty with any of these conversations or supporting your children in dealing with your illness, consider involving a counsellor.
Talking to your partner or spouse
It is life-changing for both you and your partner when you receive a serious diagnosis
John Hopkins Medicine has the following suggestions:
- Keep your usual routines going.
- Share reliable and accurate information about your condition.
- See healthcare practitioners together.
- Work together to support and encourage any suggested changes in diet, activity and rest.
Try to be as mindful as possible about the way they may feel and how much responsibility you can place on them.
You may want to consider compiling an advance directive in the presence of a professional if you find it difficult when you are alone.
Talking to your caregiver is also important
The people involved in caring for you, caregivers, are often faced with the physical, emotional and financial stress of caring for a person who has a serious illness. They may also be at risk of developing anxiety and depression.
Talk to them about how they are coping with taking care of you
You may want to consider ways to nurture their wellbeing to ensure that they are healthy enough to be there for you.
This may mean giving them time for themselves, allowing them to exercise or engage in other healthy activities. You can suggest mindfulness practice apps, which help monitor mood and stress levels. You can also send them daily inspirational messages or meditation and relaxation videos.
If you are a caregiver, you should be screened regularly for signs of stress. Develop or maintain healthy habits that feed your mental wellbeing: healthy eating, exercise, good quality and quantity of sleep, and stress management, to name a few.
- Are you coping with your serious illness?
- Discovery Health's Advanced Illness Member Support Programme offers support to Discovery Health Medical Scheme members dealing with life-changing or advanced illnesses by connecting you with a palliative care team to ensure that you get the care you need. This includes access to psychosocial support that will assist you support your loved ones.