MS and Strategies for Family Planning - dummies

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Family-planning decisions are never easy, especially when multiple sclerosis (MS) is present. All prospective moms and dads face some uncertainties in their future, but those with MS face even more because of the unpredictability of the disease. Everyone is faced with lots of uncertainties in life. However, the unpredictability of MS — from day to day and over the long haul — makes big life decisions (like whether to start a family) even more complicated.

Your best bet is to try and think through — individually and as a couple — what you would do if things got tough. Figure out how you would cope, what strategies you would use, and what resources you have available to you.

Thinking through the future possibilities — rosy and not so rosy — helps you make more informed decisions. And whatever you decide, you’ll know that your choices have taken into account the complexities of living with MS.

First, consult your MS doctor. No doctor has a crystal ball, but the level of disease activity you have experienced so far and the kinds of symptoms you have may give your neurologist some idea of how your MS is likely to behave over the long haul. Of course, you certainly have no guarantees, but talking about what may happen with your MS can highlight the important issues for you to consider.

For example, your doctor may suggest that you give yourself a year or two to stabilize on your disease-modifying medication before stopping it to become pregnant. Or he or she may encourage you to begin your family sooner rather than later because you’re doing well right now and the future is less certain.

It’s also important to remember that babies grow up pretty fast. In other words, you need to consider how you and your partner will manage your growing child. So, as you talk through your feelings and thoughts about baby-making, try to imagine your new baby turning into an active toddler and your active toddler turning into a busy preteen and then — gulp — a teen.

The odds are in your favor — but they aren’t guaranteed. In other words, if you’re one of the women who have a severe, disabling relapse following delivery, it won’t matter to you that the vast majority of women do fine.

MS and family planning: Evaluate your financial situation

Even though financial considerations are important for any couple that’s making family-planning decisions, the potential impact of MS on employment makes this a particularly important topic to discuss with your partner. You can implement strategies to keep your place in the workforce, but the bottom line is that you may not be able to work as long you had anticipated. The fact that you may not work as long as you would have hoped is important for a couple of reasons:

  • Your family income may not be as great as you would like it to be down the road, particularly given the fact that two-income families are pretty much the norm these days.

  • The partner without MS may need to take on a bigger share of the wage-earning responsibilities. For example, a mom who planned to stay home with school-age kids may find that she needs to work full-time because her partner with MS can’t.

Money worries are no fun, so make sure that you and your partner sit down and discuss your financial situation. If you need some expert advice, call the National MS Society at (800) FIGHT-MS (800-344-4867) for a free consultation through its Financial Education Partners program.

Take a good look at your MS teamwork

Parenting under the best of circumstances takes a lot of flexibility, patience, creativity, and endurance. With MS in the picture, it can require even more. So, given how unpredictable MS can be, one of the most important things to consider in your family-planning discussion is your teamwork.

For instance, ask yourself the following questions: Can you roll with the punches? How rigid are your roles and responsibilities in the household? Can you picture yourself as a stay-at-home dad or a working mom? How’s your sense of humor? Can you talk about tough stuff when you need to? The answers to questions like these give you a sense of how well-oiled your teamwork is — and better teamwork sure makes for easier parenting.

Check out your MS support network

Some couples live surrounded by family, friends, and neighbors while others are pretty much out there on their own. There’s no reason to run right out and join a commune, but it’s worthwhile to think about the resources that you have available in the event that you need some assistance now and then.

For example, you can find support people in all sorts of places: in your family, in your community, at work, at your church or synagogue, and through your local National MS Society chapter.

MS and family planning: Have a heart-to-heart with your partner

Decisions about if and when to have kids can be pretty emotional. People generally have strong feelings about this issue one way or another. And to top it all off, communicating about heavy stuff can sometimes be difficult. You don’t want to upset your partner or give someone you love more to worry about than he or she is already dealing with.

But, the fact is, holding back feelings or concerns — particularly about hot topics like family-planning decisions, family finances, and relationship issues — can come back to bite you later on.

If you’re scared to death about the future, about your partner’s ability to take care of kids now that he or she has MS, or about your own ability to pick up the slack if you have to, now’s the time to get those feelings out in the open.

Chances are, you both have some worries, and this is the time to share them. The notion that “two heads are better than one” has some merit because together you can think through the stuff that’s worrying you and figure out how you can deal with it.

If you need help having this kind of discussion, your healthcare provider or the National MS society (800-FIGHT-MS) can refer you to a counselor who can help you talk through the issues.

Talk to other parents living with MS

No matter what your concerns are, sometimes it’s reassuring to talk to others who are in your same boat. For example, you can read everything there is to know about parenting, but there’s nothing better than a real-life chat.

Chatting with moms and dads with MS who live the daily joys and challenges of parenthood is by far your best way to get information about pregnancy, delivery, chasing energetic toddlers, or anything else that’s on your mind.

If you don’t know anyone in your community who has MS, the National MS Society (800-FIGHT-MS) can connect you with other couples to talk to. Or you can check out the Society’s social networking sites.

MS and family planning: Remember that your plans can change

Many people arrive at adulthood with some preconceived ideas and dreams about parenthood. They know whether they want to have kids and they know exactly how many they want. And sometimes they have a detailed vision of what parenthood will be like.

If, for any reason, you decide to change your parenting plans — to not have kids, to have fewer than you originally planned, or to adopt rather than having your own, it’s important to remember that this change of heart can feel kind of like a loss.

Even if you’re comfortable with the decision, you’re confident that it’s the right one for you, and you’re happy with the outcome, you may find that some grieving goes along with it. If you’re feeling the need to grieve, let it happen! Grieving is part of coping with a disease that sometimes upsets the apple cart.

Whatever you decide about having children, the choices are yours and only yours — not your doctor’s, not your parents’, and not your friends’. You may get a lot of opinions about what you should or shouldn’t do, but the only right decision is the one that you and your partner make together.