When I was diagnosed with MS, it was four years before someone on my medical team volunteered any information about pregnancy and MS. I was in my late twenties when a bladder-and-bowel nurse specialist casually told me not to have kids.
My first reaction was, whatever, I don’t want kids anyway. My second thought was, how dare you, I’d be a great fucking mom. I knew enough about MS, and about my MS in particular, to know that it would have been safe and reasonable for me to have considered motherhood at that time.
Okay, so I just googled ‘what makes a great mom’ and the interwebs came back with qualities like patience, selflessness, and empathy; so fine, maybe I wouldn’t have made a great mom, but I would have made a decent mom. I know how to work a microwave, and that running with scissors is bad. I don’t know CPR, but I’m pretty sure I could google it. The point is that none of my internet deep-dive came back with anything to suggest that great parents must be able to climb stairs, maintain fully functioning bladders, or be in possession of intact myelin sheaths. That know-it-all nurse had no idea how much I swear, or how much me time I require (all of it). She dropped a potential bombshell when all she knew about me was that I had MS.
Maybe Nurse Know-It-All had been concerned about how a pregnancy might impact my MS and/or bladder issues; in which case, she could have said, here’s how a pregnancy might impact your MS and/or bladder issues. If you are interested in having children, these are the things we can do to mitigate these concerns.
But she didn’t say that. She didn’t say anything, and I was left to wonder if she thought my body couldn’t handle a pregnancy or if she thought I couldn’t handle parenthood. Was Nurse Know-It-All concerned about me or was she worried about my theoretical offspring?
The reality is that some people don’t think people with disabilities should have kids at all.
Fortunately, not everyone with MS faces this kind of medical gaslighting. MS on its own should not prevent you from procreating if that’s your jam. But many Trippers do have to contend with a degree of ableism and even internalized ableism when it comes to parenting with MS.
When my child-free girlfriends started being questioned about when they were going to pop one out, I realized that the singular time I was ever given this kind of verbal shakedown was at a party where a man I only knew casually tried to talk me into motherhood by insisting that, “You haven’t lived until you’ve had children.” Never mind that I’d traveled the world, studied voice in France, or that I once met Martin Short. I felt certain that if this pregnancy-pushing rando had known about my MS he never would have encouraged me to procreate. He probably would have approached me with a degree of pity, assuming that my barren womb was because of MS and not because kids are sticky, loud, annoying, and gross. (I mean, except for my nieces, nephews, and godchildren. You guys are great!)
When I asked Trippers about their own paths to parenthood, I received some heartbreaking responses. Jodi J had a friend ask her, “Why would you want to bring a baby into the world, knowing you will eventually be disabled?”
A second ‘Fuck You’ for at least six reasons, to whoever said this to Jodi. It might seem reasonable to try to shrug these comments off; I mean, who cares what anyone else thinks. But there can be real-life consequences when other people decide that you are not a competent caregiver.
The pressure to be the perfect parent is ubiquitous and every parent has to contend with their own limitations. People with MS may need to consider how medications impact pregnancy and breastfeeding, or how to negotiate fatigue when parenting can be exhausting. Yes, pregnancy might fuck up your already fucked up bladder, but the overwhelming feedback from parents with MS, is that it’s worth it. For many people having a family is an essential part of the human experience. We need to ensure that moms and dads with MS are supported at every point of the parenting process so that MS doesn’t steal one more life experience from you.
From micro-aggressions to super-powers, I wanted to dig deeper into parenting with chronic illness and/or disability. I was delighted when Rebekah Taussig, the brilliant and wise author of Sitting Pretty, agreed to be on this months’ podcast. If you’re a parent with MS or if you’re thinking about becoming one, you do not want to miss this episode!