MS and My Decision Not To Have Children

It is a truth universally acknowledged that a woman in possession of a womb must be in want of a child. It is this apparent truth that has kept me waiting for the moment when I, a woman in possession of a womb, would be hit with the tidal-wave of maternal yearning I believed was heading my way. Or rather, I feared was – which says everything really. I feared the impending desire for a child because as a woman who also has multiple sclerosis I knew my foray (yes, that’s word that springs to mind) into motherhood wouldn’t be quite so straight-forward for me.  

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Diagnosed at sixteen, family planning wasn’t part of my medical conversations until one locum consultant told me, at twenty-six, that if I wanted to have a baby “sooner would be better than later”.  I assume this had more to do with my being ten years post diagnosis at this point, rather than my age. Alas, young as I was; still discovering myself, life, and the world around me, having a baby was the furthest thing I could imagine myself doing, short of sprouting wings and flying to the moon.  

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I have never been maternal.  I played with dolls, yes, but I was more interested in their clothes than in pretending to ‘mother’ them. When I wrote my “dream future” at the age of eleven, I wrote of a one-bedroom open-plan ‘apartment’ in Italy which I would share with my two small dogs. Thoughts of motherhood didn’t cross my mind. On some level I assumed I would have children, because that’s just what you do; you grow up, you have a child.  That’s what my mother did, and my mother’s mother. And so it goes. I was recently able to articulate to myself something I realised I always felt subconsciously – the thought of one day having a child felt like an ending. Not a new chapter, not a continuation of my life, but an ending.  I doubt I’m the only woman who has ever felt like that, but it still feels like an incredibly radical thing to admit.

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But let’s bring it back to MS, since that’s why we’re all here. The decision my husband and I reached before we married was that we wouldn’t have our own children. Our reasoning, before either of us had given it any real thought, was primarily related to my health. I would like to make it clear at this point that MS is not, nor should ever be, a barrier to parenthood. Everyone’s MS is different, as is the context of the life around that MS. My husband and I simply didn’t want children enough to make the additional challenges (namely the extent of my fatigue) worthwhile. 

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Then many of my friends started having babies, and my greatest fear was realised.  

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Maybe I do want one of those. 

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Cue revisited discussions with my husband plotting how fatigue plus new-born could work. Then fatigue plus toddler, fatigue plus child etc. My only-child husband was optimistic that parenting would be plain sailing once the baby reached childcare age. I – the eldest of four with twenty years between myself and youngest sister – was not so sure. And anyway, why bother having a baby just to ship them out as much as possible in order to keep scraping through? But as I watched my friends get pregnant, give birth, get pregnant, give birth, my longing swelled, and I mentioned potential pregnancy to my MS nurse. 

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The main take-away from our appointment, and my subsequent appointment with my consultant, was in relation to changing DMT and relapse risk coming off my current one. Minor concerns for me, compared to my chief roadblock. I asked what support post-birth, if any, might be available. I was met with some vague and incredibly disappointing responses, including something along the lines of; “all new mothers get tired, you’ll find a way to cope”. (Thankfully when I informed my nurse of our change of heart a year later, they were much more understanding of the debilitating nature of neurological fatigue. I’m going to attribute previous comments to a bad day). 

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I went into my appointment with a list of questions written up after I attended an MS Society webinar on pregnancy. I was doing my research. I was now at a point where I knew I couldn’t make a decision – child or no child – without it being the most informed decision possible. I even asked for input here, on the Shift.MS forum.

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For months I oscillated from yes to no, no to yes. Babies dominated my thoughts.  Whenever I was doing something; napping, resting, eating, washing, I was thinking “where would the baby be right now?” How could I manage this while safely taking care of a child?”  And then one day last September I wrote this in my diary:

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A decision has been made. No baby. I was deluding myself to think I could cope with a child. There is relief in reaching this decision. Relief in the knowledge that all of my pittance of energy need only ever be spent on keeping me alive, and functioning, and happy. What finally cemented my decision was hearing a mum in the toilet cubicle next to mine, insisting that their child must “let their poo out or they will get a sore tummy”, and I thought; Jesus, I have enough of my own bodily functions to manage without having to micro-manage someone else’s. Does that sound selfish? I hope not, because there is grief in this decision too. I will never know what it is to be a mother to my own child.  Instead I will be one of the childfree women, with our own unique strength and meaning. 

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I then go on to debase some of the common arguments people are met with when they declare they have chosen to be childfree, including the fact that breeding your own future companionship (or ‘care’, as once briefly and shockingly crossed my mind) is an awful burden to place on a child “who might well choose to have a life as a human being in their own right”. In response to the good old “you might regret it when it’s too late” I wrote a simple yes, I might.  But I’d much rather regret not having a child.  All we can ever do is make the best decision based on what we know to be true in that moment. I’m not stubborn enough to believe I will never regret this decision, but I do know that I’ll always have the strength to recognise why I made it.

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Since we made our final decision I have found myself poking and prodding at it, testing myself, looking for small leaks that might unleash a tidal wave of grief. My eyes linger on babies, waiting for a surge of emotion that doesn’t come. I occasionally feel a hormone-induced desire when I see a mother with her new-born, but I can allow that feeling to exist while content in the knowledge I don’t want what comes next. I can observe my biological urges with the recognition that I am more than them. I am an evolved and emancipated woman, unbound from both fleeting animalistic urges and the sexist expectation of decades past.

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There is no doubt that multiple sclerosis has been a major factor in our decision.  Without it, I might not have felt like I would be giving up so much of myself were I to have a child. With it, or should I say with my MS, I know I would be giving up everything. All of me. All of who I am. There would be nothing left for anything else, there’s barely enough left as it is. I’m not willing to make that sacrifice, and that has been the most glorious realisation of all. 

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I have written the sentence “my health is my priority, not a hypothetical unborn child” in my appointment notebook, worried that expressing thoughts of pregnancy (or simply being a woman of childbearing age) might preclude me from certain treatments, trials, or advice. I want to say these exact words to my consultant, I want to ensure that he is on the same page. Prioritising my own wellbeing over procreating is one of the most radically Feminist things I can do, even today. Especially today. Claiming the decision to remain childfree feels empowering.

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MS is no longer the reason I’m not going to have a baby. Motherhood is not another loss I can chalk up to this disease. I am not merely a victim of circumstance, but a woman making a choice that is rightfully mine to make. 

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I am choosing myself.