My Children Might Contract My Chronic Illness

Nov 6, 2017 at 8:00 a.m. ET
Image: Getty Images

Deciding whether or not to have kids is a major life choice for anybody, and living with a chronic illness is an extra layer of complication. Multiple sclerosis has undoubtedly changed my life in many ways.

There are so many factors that often play into the decision of whether or not to have children — such as finances, locale, support and age — knowing any potential child might contract a chronic illness makes the decision doubly difficult.

While some conditions are hereditary, and the likelihood of a baby contracting them are much higher, chronic illnesses in nature are a little more unpredictable. As Dr. Patricia Coyle, the director of the MS Comprehensive Care Center at Stony Brook University says, “MS is not a directly inherited disease — there’s no single gene that passes on MS.” And according to the MS Society, if the mother or father has multiple sclerosis, approximately 1 in 67 children will contract it. While these rates might not seem high, it’s impossible not to think about whether or not having a baby will result in passing on my condition.

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I’ve met a lot of people for whom the idea of passing their chronic illness on to their future children is a deal-breaker, even if it’s unlikely they will do so. It’s perfectly understandable that the possibility of passing on a degenerative and potentially life-limiting condition to offspring is one of the reasons individuals with disabilities and chronic conditions decide not to have kids. But it can also be a reason to have them, and being diagnosed with multiple sclerosis made me reconsider my previous stance.

Since receiving the diagnosis almost four years ago, I’ve moved across the country, started dating a new person, spent way more time with my family (including my two nephews) and changed careers. In a strange way, MS gave me permission to make several difficult and unexpected choices. Finding out your body is different and that a condition is working against your immune system, against your will, is shocking. It’s also the catalyst that shakes the foundation of your life and lets you know what you really want from your own future.

For me, being diagnosed with a chronic illness didn’t put me off wanting to have kids, it made me want them more.

I’ve never felt particularly maternal, and starting a family wasn’t at the top of my list of priorities before, but my diagnosis brought the issue into focus and made me reconsider my previous “not bothered” attitude. While the possibility I might pass on my condition to any future children haunts me occasionally, I also don’t want to limit what my life could be. MS already attempts to limit my life in several ways, but having a baby shouldn’t be one of them.

Actually, what far outweighs the possibility my children might contract my chronic illness is knowing my own limitations. As MS has affected my mobility and causes major fatigue on a daily basis, I’m well aware of my own failings and the extra challenges I’ll face if I become a parent, which is why I’m so grateful to be with someone who I trust completely and who I know will support me through any major life changes involving children. We want to have a baby together, but we’re also realistic that wanting one may not lead to actually being able to have one.

None of us knows what health challenges we might face in our lives. While some people might call my decision selfish, knowing my children might have a higher chance of contracting my chronic illness isn’t a reason to stop living. Don’t get me wrong — chronic conditions can make life a lot more difficult — but they’re not necessarily a death sentence. In many ways, my life is much better post-diagnosis, as it’s more honest, and I’m learning who I am and what I need.

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There are, of course, alternative options to giving birth if you have concerns like mine.

Adoption is a definite possibility, and according to Adopt America Network, there are “102,000 children in the U.S. foster care system waiting to be adopted.” But there is also the choice to remain child-free if that’s the right choice for you or the best thing for your health. The most important things are to stay informed and to know how starting or not starting a family will affect your condition.

By Amy Mackelden