Marriage and Children: Are They for Me?

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by Amy Gietzen |

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I never was the girl who aspired to be a wife and have children. That lifestyle was never on my radar.

As women, we often hear other women saying, “I’ve dreamed about being a wife or a mother since I was a little girl!” That was definitely not me. When I was a young girl, I lived for the idea of traveling and seeing the world. A husband, children, and the stereotypical white picket fence were nowhere near my idea of myself.

Even in my late 20s, when everyone around me was either tying the knot or having children, it was never my bag. Was I abnormal? Why didn’t I want what most women around me were striving for?

I’ve been single for a long time. Even through my years of battling the most difficult parts of scleroderma, including losing my fingertips and severe body changes, I only had fly-by-night boyfriends or hookups when dating.

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My mentality was always that I wouldn’t put my illness on someone else’s plate. How could I consciously walk into a long-term relationship with a partner knowing my forever might not hold true? I didn’t want to put my sickness and my inability to have a full life on someone else. I felt like I could potentially ruin his life, which didn’t seem fair. Therefore, I have spent the better parts of my adult life single and happy.

Until I turned 40 this January. After that, a switch flipped in my brain.

I am an amazing auntie, godmommy, and Mimi to all of the little kiddos in my life. But for some reason, turning 40 started to make me yearn for companionship and children of my own to love on, play with, and spoil. It started out as an itch and then turned into a full-blown obsession.

The longing, the missing out on the opportunity of being a mom and a wife, eventually started to cripple me.

Living with this disease has forced me to wade through a lot of the white noise in my life. Scleroderma has allowed me to be 100% authentic with my feelings and my actions because of cliche mantras like YOLO — “you only live once.” When you look death in the face and laugh over and over again, as I have done with this disease, you learn to grab onto the things in life that matter the most.

The worst part of living with a disease like scleroderma is that our bodies don’t listen to us. We as patients have little control over what is happening to us. Because of that, decisions about what we want for our life, our future, and our bodies are taken from us without our consent.

Case in point: I cannot have my own children. Due to some medicines I have been on over the years to treat my scleroderma, I am unable to carry a child or become pregnant. I no longer get my period. Wanting a family feels ludicrous to me because it is physically impossible.

We as women and especially as patients thrive on the ability to choose — to say yes, I will try that drug, or no, I will not have that procedure. We have had to give in to this disease numerous times to prolong our life. We want to be in control of our bodies and have a say.

Maybe that is where all of these feelings actually stem from. The choice to have my own child was essentially made for me by my disease. That makes me feel angry and sad. Maybe if I had the ability to choose my path, I would have still chosen traveling and a life of leisure. Who knows?

I am a firm believer in not lingering on the “what ifs” in life. But the thoughts don’t just go away.

Or is it nostalgia? Twenty years is a long time to live with this disease and the related issues, which I mostly tackle on my own. Putting it mildly, life has not been easy. I need to deal with these emotions and put them in a place where I can live with them happily, having no regrets.

What the future has in store for me is undetermined. Maybe I will get married. Or maybe I will adopt children to raise as my own. Either way, just like I handled my diagnosis and life with scleroderma, I will push ahead with strength and positivity, choosing to live in my truth and take life as it comes. That is one thing that is certain.


Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

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