The 20 interview participants ranged in age from 25 to 54 years (average age of 7.7 years). Sixteen women were Anglo Australian (80%), three participants (15%) did not specify, and one identified as Latin American. The women had between 1 and 5 children (2 on average) across a range of dependent child ages. Eleven of the women (55%) had a child 5 years or younger. Fourteen (70%) of the sample were in a relationship. Eighteen (90%) identified as heterosexual, with the remainder identifying as bisexual. Ten (50%) were engaged in full or part time employment, eight (40%) were not in paid employment, 2 (10%) women were currently studying.
The women’s accounts of subjective experience were complex, with participants often giving accounts of experiencing both wellbeing and distress while adopting a range of coping strategies. Overall, three main themes were identified in the analysis: ‘Burden and complexity in the mothering role’, including the subtheme, ‘Concerns about child wellbeing’; ‘Losing control: Women’s experiences of distress’, including the subtheme, ‘Taking back control over mothering at a cost to self’; and ‘Adjusting and letting go: Women’s experiences of wellbeing’.
Burden And Complexity In The Mothering Role
The women talked about their RA as a burden, which created additional complexity in their daily lives as mothers, due to the physical experiences of fatigue, pain, limited movement, and restrictions to the ability to lift or hold weight. For example, women reported challenges in navigating daily care activities including, holding and carrying young children, dressing children, changing nappies, bathing, transporting children, ensuring children’s physical safety, engaging in school events, supporting children’s interests and activities outside the home, and limitations to engagement in physical and outdoor activities. For example, Matilda (30 yrs, young child) said, “down to anything really like the clothes you dress her in because you don’t want anything too fiddly.” In addition, Denise (43 yrs, young children) described being unable to lift her baby to put her back to bed after night feeds. She said,
It was terrible. I mean she’s my baby, and I mean I felt terrible in the middle of the night not being able to put the poor little thing back to bed. And you know babies, they don’t really want anyone but their mum half the time.
Having older children was reported to be easier by some women as they were more “independent”, with Barbara (50 yrs, older children) saying, “I can do that little bit more now because they’re older”. However, other women commented that older children “want to do more things outside of the house” (Stephanie, 35 yrs, young and older children) and can come with their “own challenges … that mentally and emotionally can be quite draining” (Vanessa, 27 yrs, older child).
Rheumatoid arthritis was reported by many of the women to affect their “mood” and shape interactions with children. For example, women described having a “shorter fuse”, feeling “cranky”, or having “less patience” with their children when pain and fatigue were exacerbated. Ella (23 yrs, young children) described caring for her young children through a flare up, saying, “Just pure pain. Trying to do the things that I normally do just not to bore the kids. It just makes me crabbier and less tolerant.” Some women described withdrawing when pain and fatigue were exacerbated, in part to keep their responses towards children “under control” (Stephanie, 35 yrs, young and older children). For example, Holly (31 yrs, young and older children) said, “I’ll tell them to go away and I’ll explain to them why. I’d say, “Look I'm in a lot of pain. Just go away. I don’t wanna yell at you”. In addition, many of the women described avoiding touch to prevent exacerbating pain, which limited how the women were to hold, or engage in physical affection with their children. For example, Hilary (36 yrs, young and older children) described experiencing a flare up when her child was young, saying, “I think the physical closeness too wasn’t there because I couldn’t carry him. So, there were a lot of things that I just couldn’t do. So, I couldn’t lift my arm, I couldn’t walk around with him in a comforting way that I did with the first.”
Being a mother with RA was described as “very hard” by many participants, with symptoms shaping the “kind of mother” the women were. Many women reported that RA made them “a whole different parent” (Holly, 31 yrs, young and older children) who was less “hands-on” or “fun”. For example, women spoke about having limited opportunities to engage with their children in enjoyable physical activities, play, or to “take them places” due to their RA. Helen (36 yrs, young and older children) compared her current mothering experience to her life prior to RA, saying,
So, so different – it’s so different. When the other two were little, we used to go for walks and go to the park and we would just play, but now, especially being back at work, I find my pain levels are through the roof again and I’m just not fun mum.
Limitations to engagement in enjoyable and physical activities raised concerns for many of the women about how children might view them as mothers or reflect on their childhoods in the future, with Megan (38 yrs, young and older children) saying, “I do worry a little bit about how they are going to perceive me as a parent when they are older.”
Concerns about child wellbeing
Concerns were voiced by many of the women about how their RA might have a detrimental influence on their child’s wellbeing. This included concerns that children were “missing out” due to the women having less energy or not being able to engage with their children as they wished. For example, Adele (27 years, older child) said,
Sometimes I just – I end up falling asleep on the couch, and he’ll be watching a movie, or playing a game, or doing something. And I’ll fall asleep. And then – so, I feel like he’s kind of missing out on that interaction because I’m so run down.
Some women were concerned their children were experiencing distress, including “health anxiety”, due to witnessing their mother with RA, “sometimes you can’t help but cry out in pain when you’re trying to walk and things like that and it does scare him” (Thea, 36 yrs, young children). Many mothers reported feeling concerned their children might inherit RA. As Cathy (35 yrs, young children) said, “I have an underlying fear that they're gonna get it too”. Finally, some women also reported feeling concerned for older children who had taken on a caring role for their mother or siblings, due to fears this could limit their development. As Paula (42 yrs, older child) said,
It’s just frustrating when you can’t hold things and you can’t do things. She’s got to cut my food for me. So we’re planning on taking a trip to Bali, how am I going to cope getting on a plane, all these things. She’s got to get out and see places and do things.
In contrast, some women talked about their older children having additional “empathy” towards people with a disability, and “independence” due to the need to perform household tasks. Across these accounts, the women’s subjective experiences of motherhood were shaped by how they perceived their children to be affected by their RA.
Losing Control: Women’s Experiences Of Psychological Distress
Many women reported experiencing “frustration”, “sad[ness]”, “guilt”, “ang[er]”, and feeling “like a failure”, or “worthless” at being unable to do things for their families due to being a “sick” or “unwell” mother. For some women, this extended to reports of mental health difficulties, including “anxiety”, “depression”, or feeling “suicidal”. As Helen (36 years, young and older children) said, “I think I still expect me to be everything. So I just feel like because I can’t be, I just feel like I’m letting everybody down. I feel like I’m letting myself down.” Women talked about having less “confidence” and feeling like a “burden” on their families. For example, the following comments were made: “I just think I’m not as reliable a family member anymore” (Alison, 54 yrs, older child), and Thea (36 yrs, young children) said,
You know what, I hated myself. I hated my life. I felt very ungrateful because I had a beautiful son and a wonderful husband, and I wasn’t able to pull my weight. I still feel like a burden, to be honest, because essentially I am a burden on my family.
Many of the women reported not wanting to ask for help, to avoid feeling like a burden to their families and being a mother who could not cope independently. As Alex (33 yrs, young and older children) said, “I hate being reliant on anyone else”, and Stephanie (35 yrs, young and older children) said,
I struggle asking for help. In my head, I just feel that I should be able to do it all even though in reality, I know I can’t. It’s a constant battle mentally from reality to what you actually need.
Women also gave accounts of feeling “isolated”, with many reporting that they did not have people they could call on for support when needed. This was particularly evident in accounts from single mothers, women whose partners worked long hours or away from home, or women who lived away from wider family supports. For example, Holly (31 yrs, young and older children) spoke about her experience of being a single mother with RA, “I'm the only parent around to help. And I'm not even doing that very well half the time”. Similarly, Adele (27 yrs, older child) said, “sometimes, the help is just not available, so I don’t have time to be sick”. Some women also commented that because they “appear to be managing just fine” (Megan, 38 yrs, young and older child), they were less likely to receive support from others. In addition, due to fatigue a number of women spoke about not having the energy to maintain their own social relationships outside the home, meaning there were fewer people to call on when support was needed. As Thea (36 yrs, young children) said, “my life is very small isn’t it, just the cleaner, my husband, my son”. A lack of support to assist the women was talked about as adding to the burden of being a mother with RA.
Taking back control over mothering at a cost to self
Many women gave accounts of “pushing through” pain, discomfort and fatigue to meet their children’s needs without compromising expectations of themselves as mothers. For example, Vanessa (27 yrs, older child) spoke about engaging in physical activities with her child: “I do push myself and I do try. Sometimes I do suffer for the next few days because of that but I think it’s worth it”. Some women reported having higher expectations of themselves to make up for the impact of RA: “I probably put more expectations on myself. I think I actually probably try and make up for the fact that I’m not the parent that they always want me to be by doing more stuff” (Megan, 38 yrs, young and older children). However, many mothers also spoke about having no other option than to push themselves despite the physical effects of RA. For example, the following comments were made: “As a mum, you have to do it. You don’t have a choice.” (Stephanie, 35 yrs, young and older children) and “it’s a lot to look after yourself and someone else at the same time when you can’t physically stop vomiting or moving. You can’t – yeah. But – yeah, you don’t really have a choice” (Adele, 28 yrs older child). For mothers with RA, being unable to attend to self-needs could be detrimental to physical and emotional wellbeing, including longer term joint health. As Megan (38 yrs, young and older children) said, “it had quite dire consequences for me if I do it too much and too often I suppose”, and Holly (31 yrs, young and older children) said,
I just make it hurt and it’s gonna hurt because I need to get to where I'm going. I don’t like doing it. And my rheumatologist told me not to do it because that’s not good for your joints, but – yeah, nobody else is gonna drive me.
Adjusting and letting go: Women’s experiences of wellbeing and coping
Many women also spoke about adjusting their mothering practices around their RA by altering the household environment, physical movements in daily tasks and activities, and arranging themselves alongside children when interacting and playing to avoid lifting or getting down on the floor. For example, women spoke about adjusting their environments so that “everything was at the right height for me” and limiting lifting young children. As Cathy (35 yrs, young children) said, “At home, I don’t do a lot of on the floor play. I would do – I put her up on the bed to play with her, saves me getting down on the ground – so, I guess it kind of – it impacts the way that I play with her.” Women also spoke about doing more “inside”, “quiet” and “sedentary” activities: “We have more activities at the couch (laugh) Like playing, like colouring, like reading, like playing with the iPad” (Amy, 37 yrs, young and older children). Other women spoke about being more organised and planning in advance to account for the unpredictability of RA, such as freezing meals in advance, “so that if it’s a bad day, I can heat them up” (Thea, 36 yrs, young children). For some women, adapting meant that they “end[ed] up operating in a completely different way”, which they did “without thinking” (Hilary, 36 yrs, young and older children). Furthermore, for some women, having “strategies in place” and adapting mothering practices meant that they were more “independent” and less reliant on support from others.
Children were reported to be positive motivators for some women to “keep going” and care for their own health and wellbeing. For example, Jodie (53 years, older child), said the following:
If I didn’t have a young child, I think I may have just curled up and died, because it was just too hard. It was too hard. Everything was too hard. Everything was painful. Everything was exhausting… she was every reason for me to just keep going. I had to get up.
In addition, Alison (54 years, older child) said, “I would’ve just stayed in bed. So, that’s really helped me actually because he was my reason to get up and get moving”. In contrast to accounts of taking control at a cost to self, women talked about being a mother as providing motivation to move and keep going, which had positive implications for self-care and joint health. For example, some women talked about prioritising their own self-care needs to preserve their health and wellbeing as part of being a mother. As Holly (31 yrs, young and older children) said, “since being sick and everything, I've realised it's okay to take care of yourself ‘cause if you take care of yourself, you can take care of the kids”.
Some women talked about lowering their expectations of themselves as mothers and acknowledging their limitations by doing less and prioritising other less physical aspects of their mothering role. For example, Vanessa (27 yrs, older child) spoke about doing less, saying, “I’ve decided that my house doesn’t need to be perfectly clear, the washing doesn’t always need to be done. So I’ve learned to really let that go and if I can’t do that stuff today, then I can’t do that stuff today, that’s just it.” Some women spoke about working in paid employment less, where financially possible, to “space it out”. For a couple of women, this meant prioritising material possessions less and focusing more on family relationships. As Amy said,
I noticed last week that I think I’ve been working actually more hours. So, I think I have to change job again. I have to be in some place where I can guarantee there can be more time with him, so rheumatoid has made me think about, okay how to present today or to think about – oh, I can do that tomorrow for him.
Across these accounts, women spoke about not being able to change their physical experience of RA, but adapting their “mindset”, lowering their self-expectations and prioritising time with children.
Finally, women gave accounts of seeking and accepting help from others that were associated with wellbeing. Having support was described as “the biggest thing” (Louise, 25 years, young children) that was critical for women’s coping (“I pretty much rely on grandparents and aunties and uncles to help me out”, Stephanie, 35 yrs, young and older children), and a way to create “balance” in their child’s life. For some women, having support from others was talked about as a normal part of motherhood, regardless of RA: “People say it takes a village to raise a kid and it definitely does” (Matilda, 30 yrs, young child). However, accepting support from others was not without its challenges. For example, some mothers spoke about fathers engaging in play and physical activities with their children in lieu of their own participation, which some described as creating “pressure” for their partners. Additionally, Cathy (35 yrs, young children) spoke about some discomfort around her child bonding with another family member, saying, “[she] cried for her grandfather rather than me that time and that was a bit hard for me, like “no you’re supposed to want me.” However, in contrast to accounts of the absence of support, in general accounts of social support tended to function as a way to alleviate burden and create opportunities for greater balance for both mothers and their children.