It occurred to me that I should talk to loved ones who have been impacted by alopecia to better understand their perspectives on all of this. I went ahead and started with the closest person at hand – my sweet six year old son. I don’t think he really understood what I was doing at first and I had to explain a few words (like “impact”), but his answers were open and totally 6-year-old honest. How I appreciate that. He gave me permission to share our conversation here.
What impact has alopecia had on your life?
Alopecia, that has made all of your hair fall out. I think you had alopecia, I don’t know, probably since I was born. It doesn’t impact me because my hair hasn’t even fallen out a little bit. Except sometimes it looks like that because I cut my hair.
What do you think we have done well with mommy’s alopecia?
Been a good mommy.
What do you think we should do differently about mommy’s alopecia?
Maybe you should try to grow it back and try not to shave it. Do you think you should do that? Maybe tell some other people that you have alopecia because it might feel a little good to not just, like, have a secret from a lot of people. Think you should do that? Do you want to do that?
What would be good about telling other people about alopecia?
That you wouldn’t have to draw your eyebrows back on every day. At least you wouldn’t have to dry off your hair if you got it wet. And you would be able to go swimming without having to not actually go diving with me. I’d really like to go diving with you.
What might be hard about telling other people about alopecia?
Some people may say bad things about it. But I wouldn’t.
How do you think you would feel if people said bad things about it?
I would kind of feel not so happy that people don’t really like that.
What would you do if they said bad things about it?
I do not know.
Maybe we could talk about some ways to answer if people say mean things about it.
Yeah that would be good.
Do you think we should tell everybody about mommy’s alopecia?
Maybe you should just like tell some people. Just people that you wanted to tell it to. And then we’ll tell it to everybody. We’ll just, like, get you started and then get you ready.
How does alopecia impact the way you see mommy, or does it?
It doesn’t really impact it at all, except if you had long hair it would look a different way.
Mommy is just mommy. I think you would just be the same if you told everybody or not.
