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I was 25 years old when I was first diagnosed with endometriosis. The devastation that followed came hard and fast. For much of my life, I’d had regular periods and very little experience with uncontrollable physical pain.
In what felt like a flash, that all changed completely.
Over the next three years, I had five extensive abdominal surgeries. I considered applying for disability at one point. The pain so great and so frequent that I was struggling to get out of bed and to work each day.
And I attempted two rounds of invitro fertilization (IVF), after I was told that my fertility was quickly fading. Both cycles failed.
Eventually, the right surgeon and the right treatment protocol got me back on my feet. And five years after my initial diagnoses, I was blessed with the opportunity to adopt my little girl.
But I still had endometriosis. I still had pain. It was (and remains) more manageable than in those early years, but it’s never just gone away.
It never will.
Where I used to deal with extreme pain practically every day, I spend most of my days pain-free now — with the exception of the first two days of my period. Those days I tend to get knocked down a little.
It’s nothing close to the excruciating pain that I used to experience. (For example, I no longer vomit from the agony.) But it’s enough to leave me wanting to stay in bed, wrapped up in a heating pad, until it’s over.
I work from home these days, so the staying in bed thing isn’t a problem for my job. But it is sometimes for my kid — a 6-year-old little girl who adores going on adventures with her mom.
As a single mom by choice, with no other kids in the home to keep my daughter occupied, my girl and I have had to have some serious conversations about my condition.
This is partly because there is no such thing as privacy in our home. (I can’t remember the last time I was able to use the bathroom in peace.) And it’s partly because my very observant daughter recognizes the days when Mommy just isn’t quite herself.
The conversations started early, maybe even as young as 2 years old, when she first walked in on me dealing with the mess my period had caused.
To a young child, that much blood is scary. So I started by explaining that “Mommy has owies in her tummy,” and “Everything is OK, this just happens sometimes.”
Over the years, that conversation has evolved. My daughter now understands that those owies in my tummy are the reason I couldn’t carry her in my belly before she was born. She also recognizes that Mommy sometimes has days she needs to stay in bed — and she climbs in with me for snacks and a movie whenever those days hit hard.
Talking to my daughter about my condition has helped her to become a more empathetic human being, and it’s allowed me to continue taking care of myself while still being honest with her.
Both of these things mean the world to me.
If you’re looking for ways to help your child understand endometriosis, this is the advice I’ve got for you:
- Keep the conversation age appropriate and remember that they don’t need to know all the details right away. You can start simple, as I did with the explanation of “owies” in my tummy, and expand upon that as your child grows older and has more questions.
- Talk about the things that help you feel better, whether that be lying in bed, taking a warm bath, or wrapping up in a heating pad. Compare it to the things that help them feel better when they’re getting sick.
- Explain to your child that some days, endometriosis restricts you to bed — but invite them to join you for board games or movies if they’re up for it.
- For children 4 and older, the spoon theory may start to make sense, so bring some spoons out and explain: on hard days, for every task you do you’re giving a spoon away, but you only have so many spoons to spare. This physical reminder will help kids to better understand why some days you’re up for running around with them in the yard, and other days you just can’t.
- Answer their questions, strive for honesty, and show them there is nothing at all taboo about this subject. You have nothing to be embarrassed about, and they should have no reason to fear coming to you with their questions or concerns.
Kids typically know when a parent is hiding something, and they may grow to be more worried than necessary if they don’t know what that thing is. Having open conversations from early on not only helps them to better understand your condition, it also helps them to recognize you as someone they can talk to about anything.
But if you’re still feeling unsure about discussing your condition with your child, that’s OK too. All kids are different, and only you truly know what yours can handle. So keep your conversations at that level until you think your child is ready for more, and never hesitate to reach out to a professional for their opinion and guidance if you think it might help.
Leah Campbell is a writer and editor living in Anchorage, Alaska. She’s a single mother by choice after a serendipitous series of events led to the adoption of her daughter. Leah is also the author of the book “Single Infertile Female” and has written extensively on the topics of infertility, adoption, and parenting. You can connect with Leah via Facebook, her website, and Twitter.