“Kids or no kids?” was undeniably one of the most significant and emotional questions I faced when I was diagnosed with multiple sclerosis 14 years ago.
I'd always been the odd one out in my family and had been playing around with the idea of immigrating to Ireland for quite some time. And at that point, I was debating whether having children would be the most defining chapter of my life.
But then, two-and-a-half years after moving to Ireland, my MS diagnosis kicked down my door and everything I still wanted to achieve in my job and my personal life went out of the window. It felt like MS had put all my plans on hold. It was like the disease left half-packed suitcases filled with tidbits from my life lying around in every room, and I never knew when they might magically close and fly out the door.
In short, on a professional and personal level, I had no input when, where and if I would live, love or laugh from that moment onwards.
The fatigue and facial pain was already bad enough…
Considering fatigue and trigeminal neuralgia (excruciating facial pain) were just a few of my symptoms, I knew I was in for a bumpy ride – and one I’d prefer to flee from as soon as possible.
Falling asleep at the dinner table had grown into an all too regular thing, and experiencing facial pain brought on by other people’s hyperactivity and sudden loud noises was already enough. I could not face the potential impact of the crying, shouting and door-slamming that inevitably goes hand in hand with having kids for at least the first 18 years or so.
Of course, I love children and even though relationships came and went, in the end, I felt the choice to remain child-free was only mine to make. Even though I tried to explain how debilitating the facial pain was, only I knew what it was truly like… especially when I learned there was a strong possibility that the symptoms could worsen with time.
What if my child inherits my MS?
Although MS is not passed down from generation to generation, there is a genetic risk that it may be inherited. This means that the risk of developing MS increases when first degree relatives (parents, siblings and children) have MS, but is far less likely in identical twins.
My choice to remain childless also stemmed from not wanting them to go through the frightening and recurring facial pain, if they were to inherit MS. Friends didn’t always agree with my reasoning and one or two questioned if my decision was selfish or not. Either way, I accepted their point of view and tried to see it from their angle, but they didn’t have MS and unlike me, they didn’t feel the facial, eye and ear pain.
Having also picked up hyperacusis (noise sensitivity) along the way, to me, noise has on occasion, been amplified to beyond excruciating. Nobody has children only to have to hide from them in a soundproof room because they’re unable to deal with loud sounds. I would constantly have to say: “Babe, be quiet,” or “Don’t touch my face because it’s so painful!” That just didn’t sound fair to me.
The decision divide
Yet, so much of what we say or do often needs to follow the rigid, preconceived ideas society imposes on us. But, do take it from me: there is absolutely nothing wrong with remaining child-free because of your illness. Just like there’s nothing wrong with having a demanding illness like multiple sclerosis.
I’ve met people on both sides of the divide. Some say if they had known one day they would be diagnosed with MS, then they would have chosen to remain child-free. Others say they wouldn’t change a thing and would opt again all over to have the beautiful kids that they have today.
What’s the ‘right’ answer?
I came to the conclusion that there is no right or wrong way to decide. Nor is there a way to tell people that you’re choosing your health over the joy of having children. Both are life-changing events and both are as equally as important and personal.
Nevertheless, it’s a difficult decision. Often, women are expected to follow in their mother’s footsteps and to follow a certain way of life that isn’t always natural to those of us who are living with neurological illnesses.
No matter where you stand on this, I hope to keep this conversation going. Is choosing your health and wellbeing over having a family considered a selfish or a selfless act? What do you think?
UK/MED/19/0158 July 2019