I was diagnosed with HAE before I got married and started a family, so my daughters have never known me without my HAE and acute HAE attacks. When they were younger, they would see the visible swellings and when I was sick. I never hid it from them. They didn’t really understand what was happening except that Mommy was sick.
Here’s how I’ve tried to help my girls understand my HAE:
- I stay calm and reassure them that I’m OK and that my doctors and I are treating the symptoms of my HAE attack.
- I try my best to keep a positive attitude about having HAE.
- I don’t say “Why me?” or “Poor me.”
- I encourage them to talk with me about my HAE and my HAE attacks.
- I’m always honest with them, but I make sure that what I tell them about my HAE isn’t too much for them to understand at the time.
My girls are more mature in a lot of ways because of my HAE. They’ve had to see me go through things other kids don’t see their parents go through. That part breaks my heart a bit. But they’ve always been able to ask me anything about my HAE. I have been open with them about my triggers for my HAE attacks. I am honest with them that even though I never give up, sometimes I do get worn out and overwhelmed. They know that’s OK too, for Mom to be vulnerable.
When I asked my girls about this blog post, they both agreed that they feel like they can handle how my HAE and HAE attacks affect our lives because I have always been so strong, brave, calm and positive. I guess I must be doing something right!
How do you explain your HAE to your family? Please leave a comment!
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