My Boyfriend Has a Scary Genetic Predisposition. Should I Still Marry Him?

My Boyfriend Has a Scary Genetic Predisposition. Should I Still Marry Him?
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I (34F) am encountering a tough one with my boyfriend (35M). An extremely rare paralysis runs in his family, and I just learned that it’s genetically predisposed; the heritability exists but the probability is unknown. If a male develops such a disease, it tends to start between 40-60yo; for female, who are the more common patients of the two genders, from 20-30yo. It means that it’s not impossible that he becomes paralyzed in a decade. If we have children, which I absolutely want and he cautiously swings between whether to have or not, I will worry for my children my entire life as well as how to tell them about it when they grow up.

He and I have been together for 2 years. We started our relationship by living together. He loves me to the bone. We are very close, and being next to him is my favorite thing to do. Even though there are problems like where to live in the future and language (we choose to speak his language at home rather than English), I’m pretty confident we can find a way out. But for the disease, it tears me that I would develop severe stress because of it, and it’ll take a toll on our relationship. I have moved to my previous city for a temporary job in order to have a good thought over this crucial decision. I feel like facing a dead end, especially considering I’m 34 despite being attractive and successful. It’d be very appreciated if you could shed some light on it and widen my perspective. Thank you.

-Odell

“The probability is unknown.”

Therein lies the problem.

If someone could give you an actuarial chart with real numbers, perhaps you’d feel better, but without that, all you have is your imagination and your fears of the worst-case scenario.

Since you didn’t mention what this condition is, I couldn’t do further research, so allow me to relate a personal anecdote that I’ve never shared in twelve years of blogging:

My father had a genetic predisposition for something called hypertrophic cardiomyopathy.

It’s the thickening of the left ventricle and it has the potential to trap blood and cause a heart attack.

Boston Celtics star Reggie Lewis famously died of this.

So did my father, on December 31, 1998.

He knew about his condition. He was on beta blockers. He and my mom never told me.

After he died, I learned these facts.

I learned that my paternal grandmother had the same condition and lived to 89.

My sister and I got tested (at age 23 and 26) and discovered we don’t have it.

I don’t know if my kids have it.

I honestly hadn’t even thought about it until now.

You asked about widening your perspective. Here it is, my friend.

You can spend your whole life fearing the worst.

Sometimes, it happens.

Most often, it does not.

My argument is that even when it does, it is better to have loved than to have regrets.

Quick example:

I wake up appreciative that I’ve had the opportunity to find true love, get married and start a beautiful family.

My cousin Todd was 39 when he got diagnosed with multiple sclerosis. He was a happily married retina surgeon who never wanted children. Faced with his own mortality, he and his wife decided to have a baby. Todd is now 59. His baby was the valedictorian of her high school and is now a sophomore at Tufts.

With care and luck, my cousin’s MS didn’t progress. He still drives and skis and paints and works out. He and his wife are building a home in Maine in anticipation of his retirement.

Ask Todd’s wife if she would have regretted having a baby even if his M.S. deteriorated.

Ask my wife if she would have regretted marrying me if I died of a sudden heart attack like my father.

Ask my Mom if she regrets being married for thirty years, only to become a widow at age 51.

You don’t have to. You already know the answer.

You’re treating a hypothetical like a certain death sentence, but it’s not.

What is certain is that we’re all going to die one day.

I don’t wake up every morning worrying about when I’m going to get cancer.

I wake up appreciative that I’ve had the opportunity to find true love, get married and start a beautiful family.

And if today is somehow my last day – and I’m banking that it won’t be – I can promise I will have no regrets about my decision to embrace love, marriage and children.

Neither will you, Odell.

 

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Comments:

  1. 1
    Chris V.

    Such a beautiful response! This is a great reminder to seize the day and love like we never have before

  2. 2
    Kath

    Consider genetic counseling and when appropriate, prenatal genetic testing. These are often done whenever there is a significant family history of a particular condition, or when certain ethnicities are known to have carriers of serious diseases or conditions. For peace of mind, Odell and her man can get a genetic consult before marrying/pro creating-and make educated decisions with a little help from science.

  3. 3
    Anastasia

    Beautiful response from EMK! I second it. My husband got diagnosed with aortic aneyurism two wks before our wedding. I did not have a doubt but I went through the realization what it can mean for us/our family (the probabilities and risks). at the end of the day I wanted to be with him and to marry him. Our lives have changed for the better after the diagnosis- you truly look at everything with a great sense of gratitude and appreciation. We both do a lot of self coaching when minds turn to worry and contemplation. But Loving someone and sharing life with that person – totally worth it and makes me so happy.

  4. 4
    Lisa

    I think the response was great. It’s almost as if we could all know the future would we want to? You can never know for sure what could happen. But I read in this response a bit of hesitancy beyond the potential for the genetic disease, she absolutely wants kids, he’s not sure etc. So I wonder if she totally removed the disease element from this scenario if there would still be issues? I don’t think anyone can make this choice for her, it’s so personal, but I do think she should not beat herself up for whatever choice that she makes. If she truly feels she cannot deal with worse case scenario, him having the disease and/or her child having the disease or both then my advice is that she not continue in the relationship. It’s the best choice for both of them. I suspect he would also not want to be with someone who was not sure if they wanted to be with him.

  5. 5
    Dan

    I’m going to give you a different take on the analytic and psych aspects of the question.

    Us humans understand relative risk very, very well. It’s very easy for us to compare two things and say that one is riskier than the other. Most of the time, we’re correct in our assessments.

    Where we fall down is our comprehension of absolute risk. We’re terrible at it. We know that it is more risky to drive on New Years Eve than most other days of the year, but what we don’t know is, on an absolute basis, whether it is “too unsafe” to drive on NYE. (I offer no opinion,other than to say that many people do drive that night and make it home without incident.)

    The same is true here. If we’re talking about conditions that have a 1/10,000 chance of getting passed on to a child (or just affecting a spouse) but otherwise would have a 1 in 1 million chance of occurring, sure, it’s a 100x more risky, but is it too risky?

    EMK gives a much more qualitative perspective on the issue.

  6. 6
    Liz

    Hi – I recall friends for whom the genetic issue was Huntington’s Chorea ( Woody Guthrie’s disease). My friend’s father had it and the family saw the horrible injustice of his death. My friend’s brother had it also, but committed suicude rather than go through what his father did. The brother, however, had children who lived with this potential inheritance. Some reports list a 50 percent chance of the children inheriting the disease.

    And so, my friend and his wife chose not have children, not only for their children but for future generations as well. They wanted to stop their contribution to the continuation of the disease. However, they also chose not to adopt, nor to have any A.I. – both potential scenarios if they wanted children.

    I am not relating this story to be negative, but rather to highlight the reality of certain genetic predispositions. I agree that much more hard information is needed before a decision can be made, such as the chance, the percentage, of inheriting the disease Does regression to the mean play a part. Even if this potential father does not have it, does that mean a child or grandchild, etc. could contract the disease. Why not marry and adopt or have A.I. if children are important? Is it negotiable to prepare in advance for the eventuality of the disease impacting your lives? There are many solutions…but only one real answer.

  7. 7
    Morgana

    Beautiful response, and I’m also wondering if her concern over this condition isn’t masking other problems in the relationship. Something feels off here. I think her concerns about language, where to live, and whether to have children are big deals that are showing up in her dramatic fantasies about his medical condition.

  8. 8
    Mrs Happy

    I personally would not marry or have children with this man unless I had a lot more information on genetic testing, and the probability of him developing the disease, and the probability of our children developing the disease, and the possibility for in-utero genetic testing for this disease, and treatment information. At 34 I’d instead find a partner without this genetic load. Neurological diseases are wretched. Odell feels like she is facing a dead end; she is not, she is just facing a difficult decision and is frozen into cognitive immobility.

  9. 9
    samanthaW

    Friend of mine died three years ago of a heart attack, and no one saw it coming, he went for a bike ride and just never came home, his partner is and was robbed of the love that they had shared for three years, however their love continues in the garden that they had spent three years creating with plants and shrubs bought here and there, artefacts from all their different travels.
    It was hard in the beginning to live with so much life around but he has bounced back slowly and now enjoys the garden as time they still spend together, love continues to grow even if the loved one has passed, don’t deny yourself this chance, death is eminent for us all we just don’t know when our name will be called out. Go live and love all you can.

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