“Mommy, am I going to get sick like you?” – When my, then 8 year old daughter, looked up at me with fear and confusion in her eyes and asked me that question, my heart just sank. It was the first time I’d realized that my kids might have the fear that they too would develop this rare medical condition that they have watched me suffer through. It’s a validated question and one we have to handle with fragility. Acknowledging their fear is important! Here are a few tips on how to handle this question, which your child will probably inevitably ask if she hasn’t already done so:
- Say, “Don’t be silly honey, of course you won’t” – This invalidates their feelings. They do not believe their question is silly and neither should you.
- Dismiss or ignore the question – Again, this invalidates them and may cause more anxiety if they feel you are “just not wanting to tell them the truth.”
- Tell them they are genetically doomed to get some horrible disease because your entire family seems to be plagued with one horrible condition or another – We don’t want our children living in fear of becoming sick or disabled.
- Validate their feelings, “I know that you must be scared of going through what you see me going through.”
- Give them assurance with a confident answer, “My medical condition is very rare. It is not something that is passed down from parent to child.”
- Educate your child about your medical condition! Knowledge is power! You don’t need to break down the anatomy of the brain or spine but you can use terminology they will comprehend to help them better understand your disease. (My 14 year old has become my biggest advocate and is proud to know so much about this condition!)