Planning For the Future: Relationships, Having Children, and Considering MS

In 2 weeks, I turn 30. I can’t say that I’m nervous about it or freaking out about it but it has made me start think about what I want to do with the next 10 years of my life. So these internal conversations cover all important topics: job, marriage, house, travel and the most difficult for me, kids. I have always struggled with whether or not I want to have kids due to my two chronic illnesses and truthfully I’m not sure I’ve ever had the instinct to mother. But the older I get, the more I think about it whether it be because everyone I know is popping out babies or because my internal biological clock is screaming at me. The reality is, my time to figure this out, is dwindling. Yes, I know I still have time, but I don’t even know if I want kids at all let alone the actual planning for a tiny human. The choice to have children, for me, has always been difficult. I can’t seem to shake the idea that for me, it would be wildly irresponsible to procreate.

I have previously read studies about the statistics of passing along MS to my theoretical children, but to be honest the stats never really influenced my decision, but they always supported it. And in my early to late 20s, I was ok with my decision to pass on having kids. In fact, I was adamant about not wanting kids, not needing kids, and proclaiming loudly that kids were expensive little fun Nazis. I wasn’t exactly delicate about the topic. Fast forward to now, and I’m fighting my body’s instinct to procreate and it makes me rethink every decision I’ve made about the topic. I’ve got MS and IBD and statistically my children wouldn’t have the best shot at growing up disease free. 1 in 200 children of parents with MS will likely develop MS and 5% of children of parents with IBD will also develop IBD. It just sounds mean to put that on a child.

So here is where I’m going to be really honest with you internet. I’ve been thinking about kids a lot more lately. Perhaps it’s the 30 milestone, or my friends who are on round two of children, or perhaps it’s that I’ve recently started dating someone who I think is great. Maybe it’s a combination of all of those things. Truthfully, probably one of the biggest motivators has been dating someone new. I feel extremely compatible with this new guy on many levels but one of the best things about him? He’s got MS too. Dating someone who also has MS has been an incredibly interesting experience. We take our medication together and it’s adorable, we get tired at the same time, and our late night conversations are so full of gibberish that no one else could possibly understand them. It has been wonderful. We talk about all of the normal “relationship” topics, but we also have excellent conversations about what it means to live with MS. Last night we talked about kids.

“Do you want kids?”

“Do you worry about passing MS on to your kids?”

“Do you think you’ll be physically healthy enough to raise a child?”

“Would you feel guilty if they did develop MS?”

“What are the stats?”

That conversation then turned into the question about what would happen when two people with MS have a child? I haven’t seen any articles about this or read any stats, so this morning I was curious and started doing some research. I had imagined that the stats would not be encouraging, but I have to tell you, they were worse than I had imagine. According to an article I found, children of two parents with MS have a 1 in 17 chance of developing MS.1 When both parents have MS, it’s called Conjugal MS and the research about Conjugal MS specifically, is seriously lacking. But let’s look at that stat again. 1 in 17? Wow, that’s not very uplifting.

So while I’m in this “figure stuff out” phase of my life, it’s starting to feel more like having children just isn’t in the cards for me. I know there are many articles with stats about probability of passing MS on to your children, and sometimes the percentages vary, but I can’t help feel like it would be an irresponsible choice for me and my life.

But what about you? Do you have kids? Do you want kids? Have you done research on the topic?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. David A Dyment, George C Ebers, A Dessa Sadovnick, Genetics of multiple sclerosis, The Lancet Neurology, Volume 3, Issue 2, February 2004, Pages 104-110, ISSN 1474-4422, http://dx.doi.org/10.1016/S1474-4422(03)00663-X. http://www.sciencedirect.com/science/article/pii/S147444220300663X)

Comments

View Comments (9)
  • rosemariewatkins
    2 years ago

    As skcullers says below, the post is old and you’ve no doubt made some decisions. I think having a partner with ms is smart. Even though every case is different, they will be able to understand you better than anybody. As for kids, I say *don’t*. I kept denying my symptoms (well, since they were psychosomatic, right?), married a guy with 3 kids and had one of my own. Everyone would have been happier if I had left well enough alone.

  • DonnaFA moderator
    2 years ago

    Hi rosemariewatkins. We’re glad to have you in the community. Please know that you are not alone in your frustrations. You may find Invisible Illness: The pain of not looking sick and Describing Invisible Symptoms and the conversation that follows, helpful.

    It sounds like you are going through a hard time. Please know that we are always here to offer support, just to listen, or to help with information when we can. You can also find an MS Peer Connection. – All Best, Donna (MultipleSclerosis.net team)

  • skcullers
    2 years ago

    Saw the post was originally 2014. What did you decide?

  • skcullers
    2 years ago

    Didn’t get diagnosed with my MS until 40 and by then had 3 kids. Now 66. Kids bring you incredible joy and incredible heartache at times and as my mother told me when my youngest was 2, they are your children forever. Mine are all doing really well, bright, kind and successful. We never regret having them and life has been a huge challenge. At the age of 35 the surgeon damaged the nerve in my husband’s face doing sinus surgery. 21 surgeries later ,3 experimental and more hardware in a brain then you can imagine his nerve pain is never less than a 3. I am braced, wear a Walkaide, always use a walker for balance and have scooters for longer distances. Almost everyone with with MS (90%) wil become secondary progressive which
    I have been for last 10 years. Would I have children again? In a heartbeat. HOWEVER, I must say that couples I know who haven’t have a special sweetness between them that remains to this day. Maybe it is not having to deal with all the focus and energy your kids take up in the hours of the day even at this age. Think you need to just listen to what your heart wants. My daughter says she never remembers her dad being well but their bond is very loving and special.

  • DonnaFA moderator
    2 years ago

    Hi skcullers! Thanks so much for being part of the community, and for sharing your personal experience and wisdom. That’s what makes this community so awesome! -All Best, Donna (MultipleSclerosis.net team)

  • debbie
    4 years ago

    Hi – Thought I’d weigh in here. I’m 48, was diagnosed with RM at 29 but the docs think I’ve had it since I was 18. Overall, I’ve been very fortunate with my symptoms of lack thereof, despite the number of lesions on my MRI’s. Anyway, 9 months after I got married, I was diagnosed. I was reeling and the thought of having children scared the daylights out of me – I thought of being pregnant as something else I wouldn’t be able to control. I was leery of relapses and of the chance of predisposing my children. While I always wanted kids of my own, adoption was always in the plan regardless. Something I’ve known since I was 5. Well, by age 33, I got brave, went of the Avonex for a year and my husband and I figured we’d try for a year. Nothing happend. My doc. was hesitant about fertility drugs as the chance for multiples for increase my fatigue. We went for Chinese that night and my fortune read “Stay true to the dream of your youth”. That settled it. The fortune is now encased in a frame with the first picture we ever received of our baby from China (in 2003). Mia is now nearly 12 and we are heading back to China in February to adopt an 11 yr. old boy. Did I mention my husband is adopted, too? We can plan all we want but I think in the end God has the final say. Babies may not always grow in your womb but they sure take hold of your heart. I don’t know what I’d ever do with out Mia, and soon, John. Good luck and God bless.

  • Melissa
    4 years ago

    I am having that issue now. My boyfriend of 7 years wants children. I am terrified now because of the rate of relapse after birth. I feel I won’t purposely progress my disease and also not be well enough to take care of my own child. I haven’t even thought about passing the disease down. I figured when the time comes I will adopt. If I have the energy to chase a child. This has become a HUGE strain on our relationship and will probably end us. He tells me I took the choice away from him with no say. I feel its wrong of him to want me to make my MS worse. Its a loss for me also. He doesn’t realize that.

  • Steve Woodward
    4 years ago

    When I was diagnosed, the first question my wife asked the specialist was, “can we still have kids?” His response (and that of every MS nurse / consultant since) was “yes”.

    Our daughter has given me a reason to push myself – I don’t want to be an absent father – and has underlined the point that the world doesn’t actually revolve around me. A fact that I needed to be reminded of!

    She has been a joy and a pain in equal measures – and there ARE times when I worry about the future, and what it means for us. But that would be true if MS wasn’t part of our lives. A couple of years back, a friend of mine was diagnosed with breast cancer out of the blue and she died less than a year later, ‘leaving behind’ three kids and a confused and terrified husband.

    Not wanting to be depressing, but no-one knows what’s ’round the corner.

    I wouldn’t have missed being a father for the world – and, knowing as little as I do about you and the things you’ve overcome and achieved in your life, I’m pretty sure you would be a fantastic parent.

    Having said that, kids aren’t for everyone, and more people should give this decision the weight and careful consideration that you are – it’s not an easy option!

    There are a lot of kids in the world who need a loving home if the whole childbirth thing is playing on your mind (and, from someone who was a close observer only once, let me tell you that there is NOTHING natural about childbirth).

    ALSO 30 ain’t that late – take a while to enjoy being with your significant other, because as soon as kids come along (if they do) there will be NO TIME. And if you think that’s a sacrifice that you’re not willing to make, then that’s fine – don’t beat yourself up, don’t have kids and enjoy your life.

    Parenthood is not for everyone and as I said above, the world would be a lot less over-crowded if more people thought carefully about having kids. You’re the master of your own destiny so do the stuff which will make you happy, without worrying too much about ticking clocks.

    See also this terrifying article about kids, parents and carbon footprints!

    http://www.theguardian.com/environment/2011/sep/27/not-have-children-environmental-reasons

    x

  • But You Look So Well
    4 years ago

    Hi — I’ve been married to my terrific husband since the PreCambrian period (in other words, since before there was dirt.) One of the first things we discussed was whether we wanted ot have children, and we both instantly and immediately said, “Oh hell no.” We both had our pathetic reasons (he thought he would be a bad dad, I was scared of needles) but as we grew up together, the reasons got better and better. My favorite was because I didn’t want my parents to be grandparents. It’s okay — they could not have been less interested in the grandchildren they did have. But a big reason became that both my husband and I were severely and clinically depressed and both came from alcoholic families; it just didn’t seem like the odds were stacked anywhere but against us, and I hadn’t even been diagnosed yet. And of course, there were environemntal reasons, as the above author suggests. So many reasons against, and so few reasons for. i have to say we have never regretted not having kids, and I certainly have never found the slightest shred of maternal instinct in my makeup. My husband got himself sterilized before our fifth anniversary and we’ve never looked back.

    Make up your own mind. Try out your maternal instincts with some pets, and take that responsibility very seriously. This is a life we’re talking about here, and the unselfish unconditional love of a dog is not to be taken lightly. Admittedly, we have cats, which is something else entirely!

    But you don’t have to have children if you don’t want them. Nobody else is the boss of you, and children are a big responsibility too.

    Good luck, and you sure have come to the right forum to get MSniks take on the kid issue.

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