What Moms With Chronic Pain Want You to Know
I’ve lived with chronic pain for over a decade, and for several years that pain was manageable. But as a mom with chronic pain, who had a difficult pregnancy and a traumatic labor and delivery, it wasn't until I had my baby that pain completely took over my life.
An estimated 126 million adults live with chronic pain, according to the National Institutes of Health, and if you’re one of them then you understand what it’s like to struggle every day. It's been a year since I've given birth, and every single day since I’ve struggled to exist. Even the simplest movements lead to unbearable pain, so I have to plan every day around how much pain I think I'm going to be in. I no longer remember what it feels like to live in a body that isn’t constantly throbbing, aching, or making me want to scream.
Still, I'm trying to live my best life. Yes, all of my energy is directed toward my child, so I have to be careful to prioritize my time accordingly. But there are days when my pain levels are lower than normal, and when I have more energy to devote elsewhere, I do. Still, I'm careful. I know a flare up can happen at any moment, so I check in with myself and my body, plan accordingly, and, like many moms living with chronic pain, silently hope that the people around me are aware of the following:
We're Trying Our Best
Whether we’re spending time with our kids or taking a few moments to just focus on our breathing, we’re doing all that we can to just keep going. We want to be great parents and we try with all that we have to make sure our illness doesn’t get in the way of that goal.
Finding A Doctor Isn't Easy
When it comes to finding a doctor, money isn't the only issue. We also have to take into account things like racism in the healthcare industry, doctors who aren’t culturally-competent, and other issues that can make us feel unsafe or negatively judged. Then there’s transportation and just lacking the energy to get ready to leave our homes.
On days when brushing your teeth is already a whole event, going to the doctor becomes something much, much more difficult than it seems.
We Don't Want Your Shame If We Take Medication
If we find medication that works for us and we feel that is a safe option, just say “congrats” and save us any variation of a concerned lecture. We don’t want to hear about it. You're not our doctors, you don't know our medical histories, and you don't live in our bodies. Medication can save lives and make life less painful. That’s what matters.
Just Because We're Smiling Doesn't Mean We're Not In Pain
The joy I feel watching my child laugh while being pushed on the swing makes me incredibly happy. Seriously, I can’t stop smiling. But that doesn’t mean that I’m not in pain, or crying on the inside, or just trying to breathe through every excrutiating ache.
Just because someone with chronic pain appears to be “OK," doesn’t mean that they are OK. Keep that in mind.
Our Kids Are OK
Wading through a sea of mom shame is hard enough, and without the added reminder that we could be doing more if we didn’t live with chronic pain. Please don’t assume that moms who live with chronic pain are failing their kids in any way. We make it work however we can, so have more faith in us.
We Aren't Overreacting
Pain is one my mind at all times because, at all times, I’m in debilitating pain. It hurts to sit up, to lay down, to walk, to sit down, to roll over in bed, to lift my shoulders, to press on my back, and, yes, I could go on and on and on. I don’t want to talk about my pain or remind people that I’m hurting. I even do my best to silence myself so I don’t annoy people. But it’s really that bad. I am not making this up.
Our Kids Take Up Most Of Our Energy
Every single day my life revolves around my child. Even if I’m in pain and can barely walk, any amount of energy I have will go to caring for my baby. Whether it's changing diapers, breastfeeding, making sure my child can get some fresh air, etc., I'll dig into the deepest parts of myself to take sure they're cared for.
So, by the end of the day, I rarely have the energy to shower or focus on myself. But I know that my kid is happy and taken care of, and I wouldn’t trade that for anything in the world.
We Aren't Flakes
I hate sending cancellation texts. Hate it. There have been times when, on the day of a planned event, an hour before I’m hit with so much pain that I can barely text my apologies to the host.
I hate it that people think I can be flaky when, in reality, I’m just at home crying in pain, wishing I could be a part of the fun.
Our Pain Can Impact Our Parenting Style
I wish I could babywear all the time, but I just can’t. I feel so lucky on days when my pain levels are low enough that I can babywear, but even on those lucky days I have to face the realization that it doesn't happen as often as I would like. And this goes for other things, too. There are some parenting choices that are directly impacted by chronic pain, like what meals we make, how we play, sleep routines, etc. Don’t automatically judge us for our parenting choices, because there’s a chance it’s not really a choice at all.
We Aren't Lazy
I work from home, often from bed, because getting out of bed hurts too much. Sometimes I purposely wait to use the bathroom because the process of putting my baby in the playpen and walking to the bathroom is just too much. Sometimes I order delivery instead of cook. I’m thankful for smart technology and pre-cut fruit at the store. I’m not lazy, it just hurts to do some things others take for granted.
We Still Want Your Invitations
Don’t assume we’ll just say “no” to your invite. Please. Let us know you still enjoy our company by asking us to come to your event. We will try to come. Like, really, really try. And if we can’t, we will be really sorry about it. But please, please still ask us. It means so much.
Please Stop Giving Us Unsolicited Advice
If we ask you to give us some tips or advice about an issue we’re having, then please feel free to help us out. But don’t just start listing your so-called miracle cures or telling us what worked for you if we don’t invite you to share. Chances are we’ve already tried your suggestion and it didn’t work, and we don't need to be reminded of that.
Just Because We're At The Park Doesn't Mean We're "Healed"
Sometimes it takes most of my energy to get ready to go to the park. So once we actually make it there, I’m exhausted and my pain increases by the second. But seeing my child smile, and feeling the cool breeze or the warm sun on my skin, is such a blessing.
But the act of being at the park, or out of the house period, doesn’t mean I’m suddenly healed. It means at that particular moment I have the energy to be there.
We Appreciate It When You Offer To Help With Childcare
Even if we ultimately decline your offer, it’s still really awesome when people offer to babysit. The gesture itself means so much and we really appreciate your thoughtfulness.
We Feel Guilty When We Cancel Plans
It sucks to not be able to do things and see our friends because of our pain. And we feel guilty about it. Like, really guilty. There's nothing worse than sending the, “Hey, thank you so much for inviting me but....” text, especially when those texts start to add up and months go by between visits.
We’ve Mastered The Art Of Appearing Totally Fine
Keeping up appearances is a talent and we all, in some way, do it. Whether it’s chronic pain or depression, endometriosis or fibromyalgia, there are countless chronic illnesses that people live with... but hide. And some of us hide them very well. Don’t assume that someone is fine just because they appear to be. They could be falling apart before your eyes, just laughing through pain.
We Know It "Could Be Worse," So Please Stop Reminding Us
Things could always be worse, but they can’t always get better. While it’s important to stay informed about what’s going on in the world, and to acknowledge that our struggles as humans vary, it’s also important to let people know that their feelings are valid.
Our pain is real. Our struggle is real. We know things could be worse. But please don’t invalidate our pain.