Talking to your child about your pituitary condition

Talking with our children about a maternal pituitary condition can feel quite a daunting task. It might be something you've been dreading and it can feel like a sensitive topic, especially if the causes of your pituitary damage involve birth trauma.

As parents we naturally want to avoid any unnecessary worry for our children. Children are naturally observant and inquisitive, so even if we haven't explained to them, it's likely they will be noticing. They may begin to notice that their mum is more tired, poorly, needing more tests or more doctors appointments than other mums. They'll become more aware of medicines and injections, along with any emergency admissions to hospital.

Of course, every family is different and every child is different, so you will have your own thoughts of how much you might like to share, and when. This is likely to change over time as your child grows and develops too. One suggestion is to start thinking and preparing ahead of time about what your child needs to know, and how much might be appropriate to share. You could discuss this with your partner, trusted friends, therapists you see, or with other members in our supportive community. The detail you share is unique to your child, you, your family and current circumstances.

For our family, we felt it was right to be open about my health from early on, without the details of how my pituitary came to be damaged. Initially, we answered questions such as "why does mummy need tablets?", "why does mummy feel poorly?", "will mummy get better?" with age appropriate answers that were relevant to current interests. 

The type of explanation we gave, at a young age was similar to this:

" Inside your head sits the pituitary gland. It's level with the bit between your eyes. It's only the size of a pea; it's small but mighty. The pituitary is a superhero because it looks after your whole body. It sends out hormones which are messengers made of special chemicals to help your body stay well. Mummy's pituitary was injured and she was very poorly a little while after you were born. The medicines replace the messenger hormones her injured pituitary can't send out any more. Mummy will need to take these medicines every day for her whole life. "

These types of questions and answers have evolved over time, as our child grows and as our own understanding grows too. For example, our child now knows that in an emergency they can call an ambulance and read the back of my medical alert bracelet over the phone. They also know where my emergency injection is carried and to get help from an adult so that I can use it. 

As your child grows older, they may want to ask more questions about the cause of your pituitary damage. These questions may come sooner than you expect and when you least expect, so having prepared in advance is really helpful. I found imagining myself in their place, what their concerns might be and what reassurance they might need helped to guide me. If the thought of this feels really hard, then seeing a therapist or counsellor to talk this through beforehand might be helpful.


Some suggestions kindly provided by Beverly Heeley, Children's Counsellor are:

1 - Timing,
2 - Following their lead,
3 - Staying curious about what *they* want to know and already know,
4 - Avoiding assumptions about what they think or know,
5 - Being conscious of the environment so it's not as confronting; for example in the car,
6 - Open questions and active listening,
7 - Reassurance.


Although this is about Mental Health, this website link has some great information about talking with your child:
https://www.youngminds.org.uk/parent/how-to-talk-to-your-child-about-mental-health/


If you'd like any more support around this area, please feel free to seek support within our safe, patient-only community. It's free to join and to access.