Talking to Children About Your Endo

TW: childbirth, breastfeeding

I need to preface this by saying that I’m not a mother.  What I write hear is based on listening to what mothers say, on having worked in childcare for more than five years, and from having been a child at some point.  I would really welcome comments from mothers in the comments, particularly those who have had to have this exact conversation.

The pressure on mothers is already immense, particularly with the increasing popularity of the internet as a way to give and receive advice, and, sadly, criticism and judgement.  Google “Mommy Wars” and you’ll get endless tales of women being criticised for doing literally anything with their child.  Mothers simply cannot win.  Imagine how much harder it is when you have a chronic illness.

Pregnancy is often touted as a cure to endometriosis.  It isn’t.  It can cause a temporary relief from pain as the body is flooded with hormones that shut down the endo growth, a state that often persists through breastfeeding.  However, far too many women report than their endo comes back as bad or worse after finishing breastfeeding.  Raising a child is, I’m told (and can readily believe) is a very difficult task, and often intensely physical.  Imagine doing that whilst dealing with chronic pain on a daily basis.

If you can’t sit through a movie, how can you sit through a school play?   If you can’t stand up long enough to cook for yourself, how can you cook for your children?  If you can’t stand, how can you carry your child around, or play active games with them?  When you already can’t sleep for pain, how do you drag yourself out of bed to deal with your crying baby?  For too many people, that struggle is a reality.  Unfortunately, a child will eventually figure out that most mothers aren’t like that.  Their friends’ parents run around with them on the weekend, but their parent needs to lie down all Saturday to recover from the week.  Their parent isn’t normal.  So, how do you talk to them about it?

Tell the truth

My advice?  Children are often more intelligent than we give them credit for and there is no point lying to them.  It’s difficult enough for childless me to maintain a facade of normality half the time, and I don’t have to do it around a small human who is attached and attuned to me.  It’s exhausting.  Parenting is difficult enough.  Yes, you will always do what you can to be as “normal” as possible for your child and give them the kind of parental interactions most children will have.  However, you will crack and you will need time to just be sick, so accept that and accept that your child will notice.  Be straight up and explain it to them.

Now, I’m not suggesting you give your 5-year-old a detailed description of exactly what the reproductive system looks like and how endometriosis affects it.  Obviously you’d make your explanation age-appropriate.  A two-year-old won’t need one.  A five-year-old might need to be told, “I have a disease called endometriosis, and sometimes that means I won’t be able to do all the things I want to do with you because I’ll need to lie down and recover.”  A thirteen-year-old, on the other hand, is probably old enough to get a more fulsome explanation about the uterus and what’s going on in there.  They’ll probably have questions.  In my view, it’s better to answer them so you know they aren’t getting some wacky information from their friends who will confidently tell them that you have massive tumours floating around in your pelvis, or something like that.

It’s also worth telling them to expect changes.  If you are starting new medication or having surgery, let them know that you may be incredibly tired for a week or two, will need recovery time post-op, or might have an unusually short temper for a while.

Tell them what you need

Children do tend to be selfish creatures.  Little ones won’t have fully developed the skill of empathy much, and that’s ok.  Consequently, though, they’ll want to know how this will effect them.  One cool thing about children, though, is they love tasks that make them feel important.  Older children, on the other hand, will feel empathy and will want to do what they can to help.  Either way, give them some age-appropriate tasks.

Five-year-olds probably can’t cook you dinner, but they can make sure that their toys are away so you don’t need to tidy up after them.  A teen might be able to take on dinner a couple of nights a week, though, and help out with other household chores such as stacking the dishwasher or folding the laundry.  Getting children involved with these tasks will take a big load off you and teach them valuable skills (and I say this from the perspective of a very spoilt child who had very few chores).

Tell them exactly how helpful this will be, and reward them with praise for helping you out.  Young children will be delighted to know that they are your special helper.  With multiple children, rotating chores will help prevent them becoming super bored and half-arsing the whole thing (for a little while, at least).  Children are also a fairly competitive bunch, so encouraging them to see who can be the best may be an effective tactic (although potentially teaches placing an unhealthy emphasis on coming first).  Monetary incentives or other treats are at your discretion.

Tell them how you can help

As I’ve said many times before, endometriosis effects every sufferer uniquely, and our capabilities all differ.  It can be helpful to tell your child the things they can rely on you to do.  For instance, will you be able to help with their homework if they come and sit on the couch with you so you can lean back?  Can you commit to the school run most of the time?  Can you do a batch lot of cooking on the weekend so all you need to do is defrost dinner for the night, so there’s always something for them to eat?  Whatever you can do, let them know.  It might change on a daily or weekly basis, and that’s fine.

Tell them it isn’t their fault

If you are on medications that affect your hormones and make you liable to tears or being cranky, tell them that it isn’t you and it isn’t them, it’s your medications.  They will probably need a whole bunch of reassurance about that if you start snapping over really minor things (obviously, do your utmost not to do that).  Parents being upset can have a massive impact on children.

One thing that they might not need to know too early on is if childbirth made the condition worse.  If you do tell them, let them know that they are worth every second of it and you don’t blame them or wish they hadn’t been born to spare you.  Remind them how beloved and precious they are, and that the fact that you can’t always play with them as much as you’d like is not relative to how much you love them.

 

Everyone will have their own approach, and what I have said here may not be how you choose to tell your child about your endo.  I’d love to hear about your alternatives in the comments below, and why you would or have chosen your way.

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