I decided that I did not want to have children so long ago that I no longer remember it. At the time, I thought I only had a 25 percent chance of having Huntington’s disease.
Since then, I have come up with plenty of additional reasons not to have my own kids, including that the maternal mortality rate is increasing in the U.S., pregnancy seems terrifying, and no one should deal with me sans caffeine. That is why, even though pregenetic diagnostic testing with in vitro fertilization (IVF) could screen out Huntington’s, I still do not plan to get pregnant.
Having made this decision long ago, I have had many opportunities to share it. If I were to make word art of the various responses I have received, the largest by far would be, “You’ll change your mind.” For some unknown reason, instead of trying to understand why I’ve made this decision, many feel the urge to inform me that I will not stick to it. Many questions pop into my head when I hear this.
The first is usually, “Why do you care?” I am not planning to have children with any of these people, so how would it affect their lives if I don’t change my mind? If I said that I am going to bleach my hair, for example, no one would feel the need to tell me I will change my mind (even though I have declared that intention and changed my mind many times).
The second question is, “How do you expect me to respond to that?” Do they think I’ll say, “Oh, yes, you are truly correct. Silly me, being so young and thinking that I have any idea what I want to do with my life. Thank you for putting me on the right track.”
When I feel like shocking somebody, I will explain that it’s because I have been diagnosed with Huntington’s. Their eyes go wide with pity and they quickly apologize, feeling sorry that I will never experience what they have decided is a necessary component of a happy life.
Maybe one day I will change my mind, though it’s unlikely. That does not mean that anyone has the right to dictate my life based on how they think it should go. Because that’s what it is: my life.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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