This is a very personal story about my body. I’m sharing it because there seem to be a ton of people out there who enjoy asking women why they don’t have kids. There are also people out there who tell us women that they know better than we do, that we will absolutely change our minds after we assure them we don’t want to be mothers. I’m hoping that by sharing my story some of those people will read it and realize how detrimental (awful) those questions can be. I’ve never really written about this aspect of my illness before but what’s the point of having a blog if you’re not going to put yourself in the most vulnerable position ever in front of the entire internet, right? *unplugs computer and hides in the corner*

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I’m twenty-eight years old and I have lupus. Because of my age and the fact that I’m in a committed relationship I’m in prime baby-making territory, so it’s easy for people to look at at me and immediately wonder when I’ll start popping them out. The thing is though, lupus can make it really hard to have children. Your risk of miscarriage goes way up, and the list of complications that can arise out of labor are uncomfortably long.

Once upon a time I really wanted to have kids. They were going to be named Amelia, Charlotte (Charlie for short), and Simon. Simon was going to be the oldest because I really wanted my daughters to have an older brother, and apparently I’m some sort of wizard that can control the sex of my future offspring.

Just a few years ago my ideal future looked like marriage, kids, a dog, a two-story house with stairs (because I was going to have working legs that could go up and down the stairs on a regular basis), an SUV, and an executive Costco membership.

But the sicker I got the blurrier that picture started looking in my brain. My energy levels dropped so much and my napping desires grew so big that I would get exhausted just thinking about having a baby. The thought of growing a human being inside of me and then having to chase that human being around for 18 years so it didn’t fall and hurt itself seemed like the most tiring thing in the world.

Despite the tiredness and the pain I still occasionally toyed with the idea of being a mother, as much as someone can toy with the idea of being responsible for another human life. I didn’t want to give up on the possibility just yet.

And then, at twenty-six years old, I got diagnosed with lupus. The first thing my specialist said to me after “you have lupus” was “do you want children?” I nervously said, “I don’t know, why?” She told me that it can be really tricky and that I would need to meet with a gynecologist who would monitor me closely. She didn’t say it was impossible. Since then I’ve met people with lupus who have had children no problem. I’ve also met people with lupus who struggled during pregnancy and labor but who bounced back, now have healthy children, and don’t regret a thing. Lupus is so unique that you never really know which path you will be taken down with the disease, and the same goes for pregnancy. It’s like a kinder surprise; each chocolate egg is wrapped in the same colored foil with the same brand name on top, but some people get really cool toys when they open it up and other people get those lame stickers. So it’s like a kinder surprise but with more tragedy, I guess.

I went home from the hospital after receiving my diagnosis and googled lupus and pregnancy. I closed my laptop after reading one or two (or twenty-five) websites, sat back and thought “well, fuck.” Pregnancy and motherhood might not be impossible but it began to seem impossible for me. I cried (I mean the all-out snotty kind of crying) to my boyfriend and he was very comforting about the whole thing. He didn’t really want children to begin with. I mean, I definitely mentioned to him in passing that my image for our future was that two-story house with all those youngsters running around, but we had never seriously discussed it because it was still relatively early in our relationship. I guess I was just planning on sneaking the kids into his life at some point down the road and hoping he didn’t notice. So when I told him that it would be hard for me to have children it wasn’t a big adjustment for him to make. I think his ideal image of our future involved the two of us playing a lot of Assassin’s Creed and going on vacations in between the release of new Assassin’s Creed games.

Thanks to my already present crushing fatigue and my inability to lift things heavier than a dessert plate for almost a decade, having to stop picturing myself with kids wasn’t as big an adjustment for me as it would have been if my illness came out of nowhere. The prior decade of sickness meant I had a head start distancing myself from that image of my future babies. The official diagnosis just meant that it was time to stop toying with the idea too. It had been awhile since I sat around the house daydreaming of baby Blundstone boots and onesies with poop emojis on the bum, so that was mostly easy for me. I was starting to really enjoy the quiet peacefulness of just my boyfriend and I. I have no intentions of ever playing Assassin’s Creed, but the rest of his ideas for our future seemed nice. Having time to nap also seemed really nice. So I started practicing the words “I don’t want children” out loud instead of just in my head and it felt right.

But being told by a doctor that it would be complicated trying to carry a baby to term still managed to feel like a round-house kick to the heart. It made it feel like it wasn’t my choice, and I don’t particularly love it when I’m not the one in charge of my reproductive organs and whether or not babies will grow inside of them. I am thinking about getting the medical sterilization procedure done to significantly lower my chances of getting pregnant because birth control makes me too sick. That’s a tough decision to make but I think it makes sense for me, and it also gives me back some of the control over my own body and what it can and can’t do.

I know there are people out there with chronic illnesses who are sick and who do their absolute best to give their children a wonderful life. I bow down to those people. They are special, strong people. I just don’t think I’m one of them.

Maybe if we both wanted kids more than we wanted anything in the world we would see every doctor imaginable and we would do everything in our power to give birth to a healthy baby. But at the end of the day, being diagnosed with a disease that makes it hard to have children is certainly a great test to see if you really want to be parents. So we opted out of that route. I didn’t want it bad enough to risk my life for it. We both know that there will always be a void there for me. I can’t really say for sure just yet how big that void will be. It’s not an easy thing to judge. I think most of the void will be filled by the deep love that my boyfriend and I have for each other. But just in case there’s still a tiny void there, I hope to fill the leftover bits with a mini wiener dog that wears sweater vests.

Too many times I begin to reach this peaceful place of acceptance just in time for someone I barely know to run into me at Starbucks, or at the grocery store, and ask me that awful, horrible, invasive question: “why don’t you have kids yet?”

It can be such a painful question to hear. That question is like a bear sneaking up on you in the wilderness when you’re just minding your own business, trying to Instagram the cute mason jar picnic lunch you packed. Sometimes the bear comes up to you and starts sniffing around but you’re able to play dead and eventually it goes away to terrorize another group of lifestyle bloggers. But sometimes it’s the bear from The Revenant, you are suddenly Leonardo DiCaprio, and after the attack you’re just left holding your insides in your hand and wondering how you’ll survive. Usually I’m lucky and the kid question just leaves me with a bad taste in my mouth for the person who asked it. But there are a few occasions when I am completely blind-sided by it because it tears open my old wounds and I start obsessing again over all the things that have changed since my lupus diagnosis. And I can’t predict when that will happen for me.

It blows my mind that someone who hardly knows me thinks it is okay to interrupt my serene afternoon sipping on pumpkin spice lattes to ask why I haven’t pushed an 8 pound human out of my vagina and started saving for it’s college education yet. I want to scream, but I don’t. Instead I usually whisper something like “I don’t think I’m having kids,” or “oh I don’t know,” while looking everywhere except in their eyes. And believe me, there are times that I hate myself for that. I do know why I’m not having kids. And I do know that it’s a very complicated part of my life that is really none of their business. I always think of a million sharp things to respond with, but not until five minutes later when they are out of my line of sight and the shock has worn off a bit.

I really wish I could look those people in the eye and tell them the heavy, heavy truth. I want them to stand there in a stupor while I explain to them in extensive detail that I’m probably not having kids because I have a disease that makes it really high-risk and I might become too sick someday to take care of them. I want to spew it all out at them and watch their awkward reaction. I know they don’t deserve to know any of those details about my life. I have no obligation to explain my illness to anyone I don’t want to. But sometimes I just want these people to feel as uncomfortable with my answer as I am with the question. I never go through with it, of course. I’m too nervous of the awkwardness that would follow.

So if you’re someone who is known to ask women why they don’t have kids please just stop. You may think it’s a harmless question, and to some women it certainly can be, but that’s not always the case. If you don’t know a person well enough to already have the answer to that question, chances are you haven’t earned the right to that information. It isn’t yours. You quite literally could be ruining someone’s day or week or month by asking that. Don’t make me tell you in aisle five of the grocery store that I’m not having kids. Don’t make me stand there next to the hot dog buns feeling numb after seeing that look flicker across your face, the one that makes me feel less than, the one that says my womanhood should be tied to motherhood. Don’t be the bear from The Revenant. Just go home, take a nap and then think about the catastrophe you almost caused in someone’s life when all they wanted was to pick up some poppy seed bagels and cream cheese for breakfast.

Thanks.

12 Comments on To The People Who Keep Asking Me Why I Don’t Have Kids

  1. Hannah
    October 16, 2016 at 8:54 pm (2 years ago)

    I have Ehlers Danlos Syndrome and 4 kids, at least 3 of whom inherited EDS from me. My pregnancies were incredibly hard on me and my health declined with each one. My 2 sons are very affected by their EDS and their infancies were horrible to say the least. I never want to go through that again. So do I wish I’d never haf kids to begin with? No because I can’t imagine life without them. But honestly, I fully understand why you wouldn’t want to go through this and respect your decision.

    Reply
  2. Marlies Vonn
    October 16, 2016 at 9:13 pm (2 years ago)

    Thank you so, so much for posting this. I know how you feel all too well. The pressure for me was intense. Not only for babies, but to get married. I got sick at 16. I was still alone, and the outside world did not see the illness. They saw the shiny veneer of someone who could cook, sew, wasn’t that bad looking. My mom’s friends would eyeball me – gawd so would my teachers – and say “wow you are going to make some man a very happy husband one day.” And I didn’t have a voice back then. As I migrated into my 20’s, I struggled socially and went from one failed relationship to another. I could barely take care of myself, let alone maintain a relationship. People at work constantly would tell me the exact same thing about kids “well when they’re your own, it’s different.” I would just sigh and smile. Now that I’m in my 40s, people stop asking. They figure “well I guess she missed the boat.” And even the silence is hurtful. I wish there were a lot more people like you creating awareness – metaphorically grabbing people by the collar and explaining that we are allowed to not fit into society’s created cultural norms, even if we did not choose to not fit into those norms. And how much we are contributing to people in our daily lives and to society outside of those norms – as you are!

    Reply
  3. Janine
    October 16, 2016 at 9:58 pm (2 years ago)

    I don’t even have a chronic health problem that would prohibit me from having children – I simply don’t want them. However, I so often get asked when I am going to have them, or told “Oh, you have lots of time, you’ll change your mind” when I say I don’t want children. I hate that people associate womanhood with motherhood and make you feel like less of a woman if you choose not to have children. Anyway, thanks for sharing your story. I shared it on Twitter because I think it’s important for people to realize that it’s NOT OKAY to say things like this.

    Reply
  4. Lyndsey
    October 17, 2016 at 10:03 am (2 years ago)

    I’ve known since I was fourteen that I had no interest in having children. It’s been a solid seventeen years of assurances that my “maternal instinct” will kick in “someday”. I should point out that these assurances almost exclusively come from men. As if they know shit about my instincts. My instincts are to kick them in the junk everytime they say that, but I resist those, don’t I??

    Reply
  5. Meena
    October 17, 2016 at 4:09 pm (2 years ago)

    This is nothing short of phenomenal. This blog post really struck a cord with me bc I am a similar situation at 30 years old and married. THANK YOU. Thank you.

    Reply
  6. Savannah
    October 18, 2016 at 8:18 pm (2 years ago)

    When I fell pregnant at 16 the diagnosis of Lupus was coming my way (my father was very generous when it comes to inherited disease including Lupus and clotting disorders). The pregnancy was a complete surprise. I had my first ob/gyn appointment with a specialist that sat down and looked at me very calmly “the lupus will become active either during the pregnancy or after when your hormones change. This will be an excruciating pregnancy, you more than likely won’t make it to 12wks due to your clotting disorders or the lupus. You are currently young and healthy. This pregnancy will either drastically reduce your quality of life or end it. Abortion is your best option.” I’ve always been prochoice, but abortion wasn’t for me. There was a life inside me, growing, with a heartbeat. I declined the a abortion, and eventually stopped seeing that specialist after her continuing to persuade abortion. The pregnancy was horrible, my junior year I made it to a total of 3 months of school (was still on honor roll though). Aches, pains, hyperemesisgravidium (non-stop morning sickness). At 16 I decided I would never have another child. The labor and delivery was the easiest part of the pregnancy, labored for 36hours at home. Why 36 hours? Because I was in denial I was in labor, I thought it should hurt more than what it did haha. I went to the hospital on Monday, the day I was supposed to be induced but was already in active labor. I received the epidural I planned on having since the beginning. 10 minutes of pushing and I had my beautiful baby boy that I fought so hard for. About 3 days after leaving the hospital I returned with weakness and the worst “anxiety feeling” in my life. I was bleeding out and had to receive 3 blood transfusions. The lupus officially became active 6months after my son was born in 2011, when I was 17. At 19, I received my first round of chemo due to my spleen attacking my red blood cells. And was diagnosed with fibromyalgia. At 20, I put on 45lbs due to the steroids. At 21, the lupus went into remission but I nearly lost my arm due to cellulitis, apparently I have another autoimmune disease – hypogammaglohulinemia. I don’t produce antibodies to fight infections, I know how to receive monthly infusions of IVIG. Now at 22, I’m currently following up on an abnormal pap smears that went from barely abnormal to one stage away from cervical cancer in a matter of 6 months.
    The ob/gyn was right, pregnancy dramatically changed my way of life. And when I have new complications I know that if I wouldn’t have come pregnant that they more than likely exist (at least not yet). But I know that everything happens for a reason. My son, who is now five and has been with me through everything, is the greatest thing to ever happen. I wouldn’t be me, if I didn’t have him. Because I have him – I know I will be alright no matter what comes my way. And BTW, at 21 I did have a tubal, because my baby deserves a mommy more than a sibling.

    Reply
  7. Kitty Colbert
    October 20, 2016 at 1:50 am (2 years ago)

    Great post! At that crossroads myself at 31… Always wanted children but with various illnesses including waiting on full diagnose of Ehlers Danlos syndrome, it will be extremely difficult and the possibility of deciding not to have kids is a tough thing to get used to. We’re thinking maybe one child, *maybe*, but still have a lot of thinking and speaking with doctors to do. Either way, it should never be assumed that women want kids, no matter what our health is like! There are definitely pluses to not having children, as many pluses as there is to having them. Thanks for sharing your story, will tweet it 🙂 xx

    Reply
  8. Melissa
    October 20, 2016 at 1:55 pm (2 years ago)

    This resonated with me. I found out about 6 months ago that I have a diminished ovarian reserve which basically means that I’m running out of eggs and the ones I have aren’t the best quality. I’m going into menopause about 10 years too early. Wasn’t even a candidate for IVF. My husband and I went back and forth about donors/adoption but have decided to be childfree for various reasons. Its been really hard. You’re right that sometimes you can brush off the questions about kids and other times its like a dagger to your heart.

    Reply
  9. Anonymous
    October 24, 2016 at 12:23 pm (2 years ago)

    I applaud you for writing this. My thought process goes something along the following lines: Stop looking down on me. Stop assuming that what makes you happy, what was the best thing for you, is even remotely close to what I want. Stop assuming that I am unhappy simply because if you didn’t have children you would have been devastated. I love my life … what can’t you be happy for me? Do what’s best for YOU! That said, you sound like you do want to be a mom. However, your boyfriend doesn’t want to have children. I just want to put this out there so you are aware of your options: What about fostering a child or adoption? Fostering isn’t even a life-long commitment. Your future child does not HAVE to be a baby … it could be older. That would be so much easier on your body, better for your health. Just a thought. Love your blog! Please keep writing! 🙂

    Reply
  10. EBD
    October 26, 2016 at 4:55 pm (2 years ago)

    Thank you for this article. There is so much focus on infertility and no one ever acknowledges the other devastating reasons why someone may not be able to have children. It’s nice to know that I am not alone.

    Reply
  11. Krystyna
    November 1, 2016 at 6:38 pm (2 years ago)

    I thought this post was well written and on a topic that many people can relate to but don’t talk about. I have Sjogrens syndrome, Lupus, and Poly cystic ovarian syndrome. I’m 22 and though I do get tired and sleepy for the most part I can lift things. My boyfriend and I still want 4 kids but my older sister has had lupus since 24 she is now 32 and her and her husband have no plans for kids. Her lupus has gotten much better but she also has blood clotting issues. Some people have Lupus worse than others and not everyone can physically handle having children. I’m glad you spoke on this topic because many people don’t understand how big of a choice that is.

    Reply
  12. Carolyn
    December 19, 2016 at 4:41 pm (2 years ago)

    Thank you so much for this post- like your other commenters, so much of this resonates with me. I am 31, have lupus and sjogrens, and I am also an OBGYN resident- so I am dealing with these questions lately from many sides. Thank you so much for this post and for being so candid. Take care.

    Reply

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