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A Perspective on, "Would You Have Kids Knowing They Could Get Your Disease?"

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by Briana Livelsberger


“Would you have kids knowing they could inherit your disease?” It’s a question that people with a chronic illness are often asked. Depending on the disease, there are different percentage rates for how likely it is that one’s children will inherit the same disease. For example, Ehlers Danlos Syndrome (also called EDS) has about a 50% chance of being passed on. Since this is one of my diseases, 50% has been stuck in my mind as I’ve looked to the future and all of its possibilities.

In support groups, I’ll see people announce that they are pregnant. They will write this announcement with a lot of joy and maybe a little fear about how the pregnancy will play out. Overall though, it seems like they are happy.

But that joy is muddled when there are people who always comment negatively, telling the expecting parent that they are being irresponsible and selfish. They’ll say that the parents should be ashamed of what they are doing to their unborn child, forcing the child to have to deal with the disease.

For many reasons, I’m not sure if I will ever want children or if I would ever want to physically have children. However, I don’t know if the fear of passing on my disease to my children would stop me. First off, it’s a 50% chance. That means there is a 50/50 chance they won’t inherit my disease. Second of all, it is true that living with a disease is not easy and there is a lot I dislike about it that I wouldn’t want my children to experience. For example, I dislike that I am almost always tired and in pain. I dislike how my abilities are different in comparison to my peers. While I like my doctors, I also dislike that I need to see so many and so often just to manage my diseases.

However, there are more things that I love about being alive than I dislike about having a disease. I love that I have close relationships and that I am able to watch my amazing cousins grow up. I love how the trees look every winter when they are covered in ice and snow. I love being able to write, read, listen to music, and dance (even if I don’t dance much anymore). I love the feeling of rain on my skin. I love the feeling of the wind on my face when swinging on a swing. I love so much about being alive that I am glad I was born.

“Would you have kids knowing they could get your disease,” brings to mind one common thought, the thought that living with a disease is nothing but misery. If living with chronic illness had nothing redeemable in it, then it would seem quite unfair to bring children into the world just to live as miserably as you did. It would seem unethical.

When asked this question, it feels like my life is deemed pitiful. My life can have no accomplishment outside of misery. There is no value in a life with a disease. With this question, my life is my disease and nothing more.

While my disease does impact a lot in my life, my life is so much more than my disease. I might have to do things a little differently from others but I am still able to accomplish what anyone else can. I can make a contribution to the world. It isn’t my or anyone else’s fault that I have a disease.

So why is it that someone who is healthy can become a parent without scrutiny while we would have to be prepared to have a philosophical debate to make the same decision?

There are many people who become parents, without being able to take their children’s care seriously. Yet, if someone with a chronic illness becomes a parent, even if they do a lot to make sure that their children are properly cared for, they are automatically a bad parent for having children in the first place.

If I want to become a parent, and I physically want to have a child, does my disease make it so that I can’t if I want to be a good person? I know some would say yes. But should my disease dictate what I can and can’t do while others can do whatever they want without considering the consequences? It isn’t guaranteed that my kids would get my disease so should I let the fear of them getting it keep me from having kids?

The decision to have children is decided by the concerned parties and shouldn’t be anyone’s business (unless there is a serious fear for the future child’s safety). Just because one parent or both have a disease, shouldn’t make it that the decision to physically have kids is left to be criticized by the public. What matters is if the parents are capable of taking care of a child and can give the child a good life. And there is such a thing as a good life with chronic illness so that shouldn’t automatically count us out of being parents.

This is one decision I feel one has to make for themselves. Whatever decision a person makes for themselves is valid, however, no one should dictate what decisions others should make. Whether I decide to have kids or not is my decision and no one else’s.

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