Living with systemic mastocytosis (SM) impacts your daily life, but also that of your loved ones. Once a diagnosis has been confirmed, it is important to communicate with friends and family on your condition and what it means. That includes the children in your life, too. Here are some suggestions for an open conversation about SM.
Why it’s important to talk to children about SM
Children are perceptive and intuitive. They often pick up on stress, sadness and changes in the world around them before they’ve been acknowledged. A lack of information and explanation about these changes can create anxiety, so it’s important not to delay talking to kids about SM.
By talking to your children about your diagnosis of SM, you will:
- Reduce their anxiety and fear.
- Build trust.
- Prepare them for changes to their daily life.
- Support their emotional response.
- Include them in your SM journey.
Tips for talking to kids about mastocytosisMastocytosis Rare disease caused by the buildup of mast cells. Cutaneous mastocytosis primarily affects the skin and is more common in children, while systemic mastocytosis affects internal organs and is more common in adults.
Before speaking to your children about your SM diagnosis, take the time to prepare what you want to say, how you want to say it and importantly, how you plan to support their emotional response.
Preparing for the conversation
Planning ahead will help make the conversation easier for you to navigate, and easier for a child to process.
- Ask your healthcare team for advice: They may have some child-friendly materials to support your conversation.
- Talk with a parent: Whether you’re explaining SM to your own child, a grandchild or a close niece or nephew, talk with their parent or your co-parent beforehand to decide on what should be shared and how the conversation might impact them.
- Plan the right moment: Pick a quiet time when you won’t be distracted or interrupted.
Navigating what to say
Your conversation doesn’t need to be long, but it does need to take the child’s age and concerns into mind.
- Give a clear, simple explanation of SM: Don’t make it too complicated, as this may cause confusion and anxiety. Explain that it’s not contagious and you are being well cared for.
- Describe your symptoms: They may have already observed your low energy, fatigue, flushing or itchy skin. Explain how SM makes you feel and what it means for them.
- Explain what may trigger the symptoms: Describe the different ways that your symptoms can be activated and explain what steps you need to take to avoid these triggers.
- Keep emotion out of it: Keep the tone light and manage your emotions to avoid passing on your anxiety. Be reassuring.
- Accept their response: It’s not always easy to predict how kids will react and what emotions may be stirred. Be ready to receive their emotional response and support them.
- Suggest ways the child can support you: Your child will likely want to help or support you. Find some small ways to help them feel involved and helpful, whether that’s giving extra hugs or helping do the dishes.
Read more about SM FAQs
Keeping communication open
The first conversation is just the beginning. Keeping having conversations about SM, what is happening and how they feel.
- Encourage questions: Give honest and factual responses, keeping information age appropriate.
- Maintain communication: More questions may come later on, once the child has processed the information. Make yourself available for further conversations.
- Consider support groups and therapists: Depending on your family’s needs, external support for yourself or a child can offer valuable help to all family members when dealing with the diagnosis.
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