Disability, Pain, and Perinatal Health

I am researcher based at the University of Toronto writing to share the experiences of women with physical disabilities with regard to pain in the perinatal period. Much of what I share below is from my doctoral dissertation: Tarasoff, L.A. (2018). A Qualitative Study of Embodiment among Women with Physical Disabilities during the Perinatal Period and Early Motherhood. University of Toronto.

The most commonly reported types of disability among women in Canada are those related to pain, limits to flexibility (i.e., limited ability to bend down and pick up an object from the floor and/or with reaching in any direction, and limits to mobility (Burlock, 2017). In 2014-2015, I interviewed 13 women with a range of physical disabilities, including cerebral palsy, spinal cord injury, and Rheumatoid arthritis, in Ontario, about their recent pregnancy and motherhood experiences (Tarasoff, 2017; 2018). Seven women reported experiencing chronic pain (i.e., pain that is always present). Several indicated that their experiences of pain were at times more limiting than their physical condition (n=4, pain often limits daily activities; n=5, pain sometimes limits daily activities). Most participants (n=11) reported that they use an assistive device on a regular or daily basis, including a cane, power wheelchair, scooter, crutches, and other devices and tools for mobility and to assist with daily activities (e.g., tasks that require hand dexterity).

There is little research on the intersection of disability, pain, and perinatal health in Canada. Several of the women with physical disabilities in my study were unsure about pain management during and after pregnancy, and reported receiving limited information from their care providers regarding pain management, including the impact that medication might have on their disability (or the progression of their disability overtime) and/or on the health and development of their child.

For example, Hillary* reported: “There were a lot of unknowns. I was told that the pain could be the same, could get worse, or could get better with pregnancy.” Understandably not knowing how pregnancy might affect disability or vice versa contributed to participants feeling anxious, on top of already worrying about how they might have to prove themselves as appropriate and capable mothers-to-be.

Even though women with disabilities are becoming pregnant at increasing rates (Brown et al., 2020), they continue to experience a great deal of stigma related to sexuality and motherhood. Several participants in my study seemed to go above and beyond to be “healthy” and do all of the things that “good” pregnant women are “supposed to do” out of fear that if did not have a “healthy” child they would be to blame. For example, even though she experienced chronic pain that was exacerbated during pregnancy, Angela,* who has cerebral palsy, stated that she refused to take pain medication during pregnancy:

“My doctor kept saying that she could give me medication [and] that I’d be okay, that the baby would be ok but I couldn’t do it. … I didn’t want to take anything during the pregnancy I felt because if something happens, if Jacob came out and something was wrong with him, I didn’t want people to turn around and say ‘well, see, it’s your fault.’”

In Angela’s case, while she may have believed that she was doing all that she could to ensure that she had a “healthy” baby, she may have put her own health and well-being at risk. She shared that during pregnancy she “was in constant pain,” often “couldn’t make it to her walker, to the bathroom in time,” had “tears streaming down my face,” and “didn’t sleep, really, at night.” Pregnancy was physically and psychologically taxing for Angela: “I hate to say this, but I had some days where the pain was so bad that I just wanted to hurl myself down the stairs.” Angela got visibly emotional during our first interview together, sharing that during pregnancy she lacked support from her partner, felt isolated, and later confided that she felt “really guilty” about thinking about hurting herself to deal with the pain she experienced during pregnancy. She seemed to blame herself: “there’s nothing that I could have done differently to make the pain better. Like the only thing is like if I lost weight and was in better shape before I became pregnant.”

Changing individual health behaviours were not always feasible for women with disabilities, particularly given their mobility limitations and other issues related to their disabilities, as well as symptoms of pregnancy itself (e.g., nausea) and life circumstances (e.g., low socioeconomic status, lack of social support). Many participants shared that their experiences of pain were at times more limiting than their physical, mobility, or functional restrictions.

Not only was pain and pain management a concern during pregnancy, pain also shaped participants’ breastfeeding experiences—a consideration that was seemingly overlooked by health care providers attempting to support them with breastfeeding:

“I just remember a lot more pain. And I remember when the nurses were trying to teach me how to nurse [breastfeeding]. They were encouraging me [to] go in all sorts of uncomfortable positions, which I think just aggravated my joints more than anything, you know? I don’t think the RA [rheumatoid arthritis] was considered at all; it was almost like they were just like figuring I would figure it out. There was no adaptation at all to my [disability].… My hands they were badly damaged by the Rheumatoid arthritis, but they still didn’t seem to consider my comfort while [I was] holding my baby for long periods of time or even the fatigue.” (Sarah*)

“Breastfeeding I found was harder for me…. I tried [with her first son]… and then it was like my arms hurt, it’s too painful, whatever. So this time I didn’t even try.” (Dawn,* who has a congenital bone growth disorder)

Dawn shared that while she was pregnant with her first child, her experience of pain dissipated. But when it came time to breastfeed, pain returned. Based on the struggles she experienced trying to breastfeed her first child then, she made the decision not to breastfeed her next child:

“Well, so with [first son] I wanted to try [breastfeeding] so I tried doing it and so remember how I said it took the pain away. When, after I had him [second son], it was almost like all that came back at once, all the pain, so when I was trying to breastfeed him it was hurting my arms really bad…new positions and everything and he just wasn’t latching on and I was getting frustrated… Ack, I’m just going to bottle-feed.”

Generally, mothers with disabilities tend to be socially isolated, and few parenting programs are accessible to them. Chronic pain also shaped how women with physical disabilities could participate in social and peer support activities as mothers.

Hillary, who had a spinal cord injury that did not change her ability to walk, shared that her secondary condition of chronic pain limited her ability to keep up with other mothers:

“I know I’m disabled but not necessarily the people around me [do]…. Being invisible some of the time, having the invisible disability can be difficult because you’re dealing with a problem that people aren’t aware of …. I have a hard time relating to other young mothers because there’s so many things I can’t do. I can’t keep up with the stroller walk; I just can’t walk as far as a lot of able-bodied women can so I don’t [do] that kind of social thing…. It’s hard to explain it [to] someone who hasn’t experienced pain in a significant way.”

Several participants explicitly shared that with motherhood came increased pain and decreased mobility. Bodily changes and the limits posed by their secondary conditions, made some participants feel disconnected from other mothers, as well as feel and like they were failing at motherhood or letting their children down.

“The fatigue is another common complaint with the pain so that would probably the biggest thing … if you’re always tired, it’s hard to be on your best, be the best parent.” (Sarah*)

“People tell me to enjoy this period of my life because it goes [by] so quickly. They are not babies for very long. I wish I could enjoy it more because so much of his early months were really [exhausting]. I was dealing with a lot of pain just because of the amount of physical work I was doing to take care of him. It was hard to enjoy it because I was in a lot of pain a lot of time. So that definitely overshadowed that experience for me. … Like the pain of my limitations, it does colour every aspect of how I look after him. I wish I could do more for him and I get really frustrated by how limited I feel. I wanted to do more. I like to take him on longer walks and do different activities and I just don’t have the energy. I wish I did. That’s where it has kind of overshadowed my sense of being a mother” (Hillary*).

The above narratives reveal that participants’ embodied experiences of mothering were very much shaped by their embodied experience of disability; Hillary, for instance, shared that her disability “colours” how she cares for her son.

In addition to reflecting on the immediate impact of disability on their mothering, some participants expressed worries about what impact the worsening progression of their disability may have on how they mother in the long-term. As Dawn points out, the long-term impact of disability on one’s body and consequently on one’s family is not an issue that most mothers have to worry about.

“With the second [child], I had developed a lot more pain in my body, and it makes me very limited in what I can do. …. The more you carry a baby, the more pressure on your hips and things like that. It affects you. Yeah, since having the second one, for sure, it made a lot more pain in my joints and now I have to really focus on thinking about when am I gonna [sic] have that hip replacement and how I’m going to do it cause my husband works crazy hours. Who’s going to watch my kids while I have the surgery? So again, it’s something a normal, quotation “normal” mother would not have to worry about, where[as] it’s something that I have to look in the future and think about ok, how am I going to make myself better and not in so much pain so I can be a better mother for my children? Because I find and I’m sure other mothers understand, but when you’re in pain, it makes you so much more tired. When you’re tired, you have less patience. You’re irritable, and that’s just makes you not a good mother because I have no patience for my son. I’m like ok, mommy just needs to sit for a minute. And I’m lucky. Most of the time he’s quite understanding but it sucks. I want to be able to do lots and lots of things with him, you know?”

Dawn’s narrative suggests that she was worried not only about how things might change for her physically over time but how the progression of her disability might impact the type of mother she was; she seemed to worry about not being able to live up the expectations of a “good mother.” Likewise, not being able to do some things for or with their children because of their disability caused some participants, like Dawn, to feel guilty: “not being able to do the things that I want to do because I’m in pain makes me feel like I’m a bad mom.”

There is a great need to consider how pain and pain management affects the perinatal health and breastfeeding and motherhood experiences of women with physical disabilities. Women with physical disabilities often use prescribed medication to help manage their disability or related symptoms or secondary conditions like chronic pain (Byrnes & Hickey, 2016). This is particularly important as women with disabilities are becoming pregnant at increased rates (Brown et al., 2020; Horner-Johnson et al., 2016) and there is evidence that women with disabilities experience high rates of unintended (unwanted or mistimed) pregnancies (Horner-Johnson et al., 2020). Recently published population-based data from Ontario indicates that 1 in 8 pregnancies was to a woman with a disability in 2017 (Brown et al., 2020). However, women with disabilities are at elevated risk for perinatal complications (Tarasoff et al., 2020) and encounter numerous barriers accessing and navigating perinatal care, including information regarding pain and pain management as it relates to their disability and pregnancy (Tarasoff, 2017). Recent findings regarding the preconception health of women with disabilities in Ontario further emphasizes the need for greater research on the intersection of pain and pain management, disability, and perinatal health; we have found that women with disabilities have higher rates of potentially teratogenic medication use (i.e., medications that could cause birth defects) than women with without disabilities in Ontario (Tarasoff et al., under review).

These findings suggest that more needs to be done to support women with physical disabilities in the preconception, perinatal, and postpartum periods with regard to pain and pain management. Discussions about pain and pain management should begin in the preconception period, if possible. Perinatal care providers (e.g., obstetricians and midwives) are encouraged to work with disability and pain-related specialists to better support their disabled patients and connect them with relevant resources, such as occupational and physical therapy and community-based supports.

*Names have been changed.