The Motherhood Decision
by Mary Elizabeth McNary
|Mary Elizabeth with her husband, Patrick and their twins, Aidan and Aisling
The motherhood decision
(the choice to forgo, start, or enlarge a family-whether by adoption or
by pregnancy) is one of the most important that a woman ever makes. When
the woman has MS, that decision becomes more complicated.
I have had multiple
sclerosis since 1987. The motherhood decision was so difficult for me
that I ended up spending several years in graduate school conducting research
on the subject. The results of my study were published in a special, MS-focused
issue of the Journal of Vocational Rehabilitation ["Themes arising
in the motherhood decision for women with multiple sclerosis: an exploratory
study," 12 (1999), 93-102]. InsideMS asked me to summarize my findings
here, and I hope that the discussion will be helpful to any reader who
is currently struggling with these questions. I wish you all the best,
whatever you decide.
We are more like
other women than not
As I began researching the professional literature on MS, I found that
nobody had identified the themes that actually accompany the life-changing
choice of whether to have a child when the potential mother has MS. I
interviewed a small group of women with MS. I identified 27 themes that
the women in the sample had considered as they made their personal decisions.
Twelve of them arose in the motherhood decision of every woman in the
study. I found it very interesting that of these twelve, only four were
specifically related to MS. The professional literature had neglected
to mention that women with MS are more like other women than we are different
For example, every
woman thought about how having a child would affect her life's work, be
it inside or outside the home. Every woman with a partner considered that
partner's role in parenting a child. Everyone thought about the demands
and responsibilities that motherhood imposes and about the people and
organizations that could help. Almost everyone in this study expressed
concerns about financial resources, justice, equity, stress, and burn-out.
What MS added
What did MS add? Each woman I interviewed had considered the possible
effects of MS on the members of her family, and on the family dynamics.
Each had reviewed her own physical and cognitive capacities and all had
considered the negative changes caused by MS. All expressed concerns about
their future abilities to perform tasks. Some, but not all, worried about
the effect of future disability on their children's emotional health.
Because this was a small, qualitative study, it is difficult to draw any
firm conclusions. What issues do women with MS explore? What issues do
they tend to avoid? A much larger study is needed to answer these questions.
One important concern
that might arise in the motherhood decision of a woman with MS is the
question of whether she risks passing the disease on to her child (see
"Hot Button Issues"). This did not happen in my study, possibly
because the women in my sample were well educated about the disease and
probably knew that the risk is low.
Creating a climate
Examining the themes that arise-or fail to arise-in the course of making
this choice would have implications for the doctor-patient relationship,
family counseling, rehabilitation, and creating a climate of respect for
the decision regardless of whether a person decides to become a parent
For some people, life
without children is a viable choice that should be respected—not condemned
For others, life without
children is literally unlivable. Can support be found to make parenthood
possible for each man or woman who desires it regardless of any potentially
disabling condition that person may have?