Pregnancy and Chronic Illness

Source: Katie Willard Virant

Something about the topic of pregnancy makes it a lightning rod for strong opinions and hurt feelings. I believe that we don’t value the lived experience of pregnant women as much as we should, and I hesitate to add myself to the list of writers telling women what their pregnancies are and/or should be like. When I dug into the research, I found it informative and worth thinking about. But I’m aware that every pregnancy is different; that one’s pregnancy experience is affected by a myriad of factors, many of which have nothing to do with chronic illness; and that generalizations can leave some women feeling unseen and misunderstood.

So I attempt to present my findings with the caution that women with chronic illness are individuals who experience their pregnancies uniquely. Some readers may see themselves in the research; others will not. Please feel free to share your experiences in the comments section as you feel comfortable. We all learn from each other.

As much as 27 percent of pregnancies are affected by chronic illness (Tyer-Viola & Lopez, 2014). There can be risks associated with these pregnancies, including an exacerbation of the disease, maternal issues like hypertension and preeclampsia, and fetal/infant issues such as growth restriction and premature birth (Tyer-Viola & Lopez, 2014). What is less frequently spoken about is the emotional experience of pregnancy in women who live with chronic illness.

The Wish to Have a “Normal” Pregnancy

We who live with chronic illness are acutely aware that our illness creates burdens not carried by healthy people. We live with these burdens, finding ways to manage as best we can. Many of us come to a more-or-less grudging acceptance of life with illness. Pregnancy can unseat this acceptance and create a profound longing to be “normal,” even in women who have already done a substantial amount of emotional and psychological work regarding their illness (Tyer-Viola & Lopez, 2014; Whiteley & Gullick, 2018).

Psychoanalyst Joan Raphael-Leff notes that pregnancy is a period of psychic vulnerability in which previously buried emotions come to the surface (Raphael-leff, 1990). One’s body is changing rapidly, sparking awareness of earlier body memories (Raphael-leff, 1990). For chronically ill women, these profound feelings about the body include experiences of illness. The terror, despair, anger, and grief that we’ve felt about our bodies may come rushing back in ways that feel destabilizing.

Can My Body Grow a Healthy Baby?

Those of us who live with chronic illness have experienced our bodies as malfunctioning. Our lived experience is such that we may come to believe that our bodies are fragile, delicate, and always poised to betray us. It can be difficult to ease into pregnancy with the confidence that nature will take its course, and our bodies will perform without a hitch (Whiteley & Gullick, 2018).

Symptom management, always important, becomes imbued with new meaning: “If my disease flares, what will happen to the baby?” A hyper-awareness of bodily changes intensifies, and worry over what is occurring or could occur in the body increases maternal stress. Pregnancy can be experienced as a waiting game rather than as an enjoyable time of being with one’s child, with the chronically ill mother counting the days until the baby is out of her body and “safe” (Tyer-Viola & Lopez, 2014).

Will I Be a Good Mother?

Pregnant women with chronic illness may be concerned that their child will inherit their disease, or that the life-saving medications they take while pregnant will adversely affect the baby (Ghorayab et al., 2018). The fatigue and disease exacerbation that many chronically ill pregnant women experience may cause them to doubt their ability to parent well. They may worry that they will not be able to breastfeed, that their illness will render them unavailable to their child, even that they may die and leave their child motherless (Ghorayeb et al., 2018).

How to Cope and How to Thrive

We cope by allowing the expression of all of the feelings we experience. Mental health clinicians who work with pregnant women recognize that pregnancy is a time of ambivalence (Sacks, 2017). We love the baby; we fear the baby. We look forward to birth; we dread birth. We crave the intimacy of our connection to our infant; we feel smothered by the closeness and overwhelmed by our baby’s dependence.

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Find people who will encourage and accept all of your feelings about your pregnancy. Women with chronic illness experience this normal ambivalence in ways that are affected by their illness. Support from other chronically ill mothers and/or from a therapist who works with chronic illness is beneficial (McGrath & Chrisler, 2017).

We also cope by recognizing our limitations and strengths. We live with illness. This means that our energy and health are compromised. We live with illness. This also means that we are incredibly resilient and very good at coping with unpredictability—good skills to possess as parents (Ghorayeb et al., 2018).

Finally, we cope—and thrive—by throwing perfection out the window and setting the goal of being "good enough" (Winnicott, 1953). Motherhood has been sanitized, glorified, and romanticized in ways that mess with our minds (Raphael-leff, 2010). The truth is that—chronically ill or not—there will be times we feel exhausted, inept, and holding on by a thread.

We can’t do this alone; we are not Superwoman; some days will be better than others. We already know these things, because we live with and work through and around imperfection in our bodies every day. Can those of us who live with chronic illness mother well? Emphatically, without hesitation: Yes.