Sprawled on the floor of their blue and red bedroom, having read the same picture book over and over until they finally stopped clamouring for ‘one more time’, I had to remind myself that I was at work. I was doing a job. It wasn’t my house, they weren’t my children. Nor was the family pet my dog. But it was a job I loved more than I ever could've imagined, even if it was one I’d stumbled into quite unexpectedly.
After being diagnosed with a chronic illness, M.E (sometimes known as 'chronic fatigue syndrome'), at the age of 21, I left a corporate job after only eight months, as the stress was making me sicker. Instead, I started looking after children – initially just for a few hours a week. But it turned out that spending time in the park, baking cookies for their class and teaching them to read came naturally to me, and quite quickly, the role saw me become a full-time nanny to two mischievous young boys in my local town.
I loved them, truly. I told my friends it was like playing house, pretending to be a part-time mum. I would iron their school shirts, make their lunches, and watch their sports days. Only the more time I spent acting like their mother, the more I became unwell – and the more I had to reckon with the complicated notion of sick motherhood. Five years on, I am now afraid of having children, which is a complicated feeling to live with because before I became disabled, it was all I ever wanted.
Fast forward to the present day, my desire to have children remains but my belief in myself that I could be a good mother has diminished. I stopped nannying after a year, barely coping with the long hours that were making my fatigue and chronic pain worse. I made a late attempt at university, trained to become a teacher in hope of keeping my nurturing side alive but before I graduated I had two more diagnoses under my belt and was more unwell than ever, making it impossible to teach in a classroom or return to nannying.
I am five years into my chronic illness existence and it is that; mostly an existence. I live with multiple complex chronic illnesses, all are lifelong, most incurable – so there really is no ‘getting better’ any time soon.
My ability to work, to socialise, to look after myself fluctuates, and it’s those rapid changes between light and dark that cause me to doubt my ability to care for someone else 24/7. I am happily in love, looked after mostly by my partner, who has on occasion for weeks or months at a time, taken on the role of an unpaid carer too. I wanted children before I met him, and now when I see him entertaining the children we know, or the toddlers he makes laugh in A&E as we spend Friday nights waiting for me to see another doctor, I know how much he does too.
But despite 14.1 million disabled people living in the UK, and 21% of family households having one disabled parent, why does it still feel like there’s some sort of taboo surrounding parenting when you’re disabled? And why have my feelings towards motherhood changed so much since becoming disabled?
Another way to mother
Although increased representation alone won’t create the social change disabled people desire, whether they are parents or not, the way we see ourselves, and others see us - on television screens, in news articles and books - contributes to a culture of ableism which is rife in the UK today. The media is covered with ‘inspiration porn’ detailing the lives of non-disabled mothers raising their disabled kids. There is, however, a noticeable absence of disabled mothers raising non-disabled (and disabled) kids. Is that because society views us as unable to mother properly? As unlikely to find love and a partner, the usual precursor to creating a family? Or that bodies in wheelchairs, with walking sticks or crutches, couldn’t possibly keep up with the fast-paced lives of little ones?
Whilst writing this piece and searching for brilliant women to speak to, I was bombarded by offers from non-disabled mothers raising disabled children wanting to speak about their experiences with disability (which arguably is not theirs, as there is no informed consent for disabled children who are the subject of Instagram accounts or stories in tabloid papers). Multiple disability-focussed charities also said the same, responding online the lines of: “Sorry, we mostly collect data on non-disabled parents, not disabled ones”.
Whilst we must acknowledge the particular challenges in raising any child, including those who are disabled, it is different to being disabled yourself – and that lack of space, both on and offline, for disabled mothers to discuss their own challenges, is an indicator of the societal expectation that disabled mothers simply do not exist.
But they do – and 29-year-old Elizabeth, a mother and therapist in training, who has a growing online presence thanks to her dancing videos on Instagram starring both her daughter and her catheter bag, is proof of that. She's proud to show her followers and fellow disabled women that sickness doesn’t stop you being sexy, or being able to explore the world; as we catch up, she's prepping for a trip to India in the hopes of catching up with loved ones and seeking new treatment for her endometriosis.
Elizabeth glows with the joys of mothering her young daughter, but also lives with her full body inflammatory condition, that has resulted in a loss of bladder control. She now relies on a catheter bag. Amongst being a mother, studying for her masters degree and keeping her household in order, Elizabeth is a chronic illness advocate for South Asian women living with endometriosis, a lifelong condition.
Speaking to Cosmopolitan UK about the complications involved in raising a child while living with endo, she explained, “The most frustrating part for [my daughter] seems to be the inconsistencies of my abilities from day to day. I can’t reliably be the one who takes her to school, or to football practice as it varies on my symptoms and pain — she makes it clear that she’s frustrated by that.”
It's difficult for a child to understand dynamic disability, that on some days you'll feel okay and on others you can't get out of bed. So many of us are still attempting to get used to that fluctuation ourselves, but Elizabeth has tried a few things that help her young daughter navigate the change. “I have a catheter bag that my daughter has named ‘Priscilla’'. When I first needed the bag in 2019, she was only three and couldn’t quite grasp what was happening, so, personifying it was helpful for us. All she knew was that mama was in the hospital a lot and had to miss her school functions.”
Elizabeth adds that when her daughter asks “but when is Priscilla going away forever?!”, it perfectly encapsulates the struggle of sick motherhood for her – more than anything else, she’d like not to have this ‘third person’ come between her and her daughter.
When Thea and I connect online, I quickly come to see her as a near-identical replica of myself, just a few years older, and doing motherhood in a way I would wish to. We both have Ehlers Danlos syndrome, a genetic condition that impacts our connective tissue, joints, muscles and digestive system. She’s vegan (me too), loves to travel (me too) and cares a lot about the future of the planet (you guessed, me too).
Thea is 32, living with multiple other illnesses too and is a full-time wheelchair user. She’s raising her two-year-old daughter and three-month-old baby boy, whilst tackling living in an inaccessible place (which, for the uninitiated, is just about everywhere). As we exchange voice notes, Thea explains that the act of getting pregnant can also be a lot more complicated when living with an illness – rather than having the luxury of simply deciding one day to start trying for a baby, she had to speak to each of her specialist doctors and wait to find a stable period of health before doing so was safe.
The physical act of carrying your future child is often glossed over as being sacred and ‘natural’, but for Thea, and many others, the risks of pregnancy both to the baby and their parent run much higher, so decisions cannot be made lightly. The constant presence of ableism within medical institutions makes expecting a child ever more tiring, too. Thea spent hours researching how her care plan would need to be adapted, corresponding with social services to understand what support there was available and negotiating what appointments would be attended when.
Speaking about her early experiences of trying for a family she says, “By being as prepared as we possibly could, it helped me deal with my own internalised ableism about becoming a disabled mother and to deal with the sometimes negative attitudes of others towards me becoming a mum too.”
There is also the sheer mundaneness in being disabled to consider as well, an everyday chore of trying to go places and do things in a world that isn't set up to help you, and most of the time, purposefully hinders you.
From the women I spoke to, there was a persistent acknowledgement of fear and of the ways others may judge them as a parent, something that rings true in research too. One Disability Rights report cites a severe lack of support for disabled parents and a culture of monitoring them that involves excessive check-ups and spot checks to ‘catch them out’. It's informed by a discriminatory idea that disabled parents are “a potential risk” to their children.
On my quest to learn more about disabled parenting, I get in touch with Holly. A 34-year-old mother who takes serious pride in her garden (and laughs about why she chose such a physically enduring hobby as a sick person). Up until her illness became too difficult to manage, Holly worked as a bookseller, but for now she’s content with reading at home and raising her two children, ensuring they develop the literary gene too. She lives with end stage renal failure (ESRD), while parenting two kids under five.
We talk about her most recent pregnancy. Her health has been in a bad place recently when compared to the years before (I know that feeling), but motherhood somehow became easier with two babies, rather than one, she tells me. It helps to ease some of her guilt about her children feeling excluded.
“I see parents doing things I can't imagine having the strength to do. Parenting through pain and illness is not as impossible as I thought it would be, but the worry that it’s unfair on them and that they are 'missing out' is the worst part,” Holly says. “This has been exacerbated during the pandemic. I am clinically extremely vulnerable and as such we've had to avoid so many things we would've loved to have done – and I knew that my health was the thing stopping it. The guilt is heavy.”
Thea echoes much of the same sentiments around inaccessibility, made worse in recent years: “I spend a lot of time researching which baby and toddler groups, soft plays, playgrounds are accessible for me, and which swimming pools have hoists, so that I can go swimming with my kids. But then I’m used to that from before motherhood anyway.”
Oftentimes the ‘let's pretend we should be grateful for being disabled’ narrative is the one wheeled out at the end of these kinds of articles. But truthfully, there are no silver linings to sickness. There is no redemption to living with illness and facing discrimination for it, I wouldn’t wish it on anyone. Although that's not to say life is joyless, far from it.
When reflecting on the most joyful part of motherhood, Thea observes,“There’s just such an indescribable amount of love, it’s the most rewarding thing ever. My kids are amazing little people and I feel so lucky to be their mama.”
And for Holly, becoming a parent has changed her relationship with her body and sickness for the better: “Motherhood is something I never thought I would manage, [but it] has shown me my body in a new light. As have the children. My youngest is far too young to have a clue about anything but the little noises she makes as she enjoys a feed means I know that my body means something to her,” she shares.
Hearing how these mothers are juggling joy and sickness, I think again about my own future, about if I really can do it like these women are. Elizabeth gives me a pep talk (and not for the first time), “Six years later, here I am. Absolutely in love with motherhood and all of its complexities. Absolutely in love with [my daughter]. Absolutely in love with me. Finally, it does get better. I promise you that. Her curious eyes and bright smiles have made the intensity of persisting pain softer. She has made my soul stronger. But it didn’t happen overnight.”
There are many more conversations still to be had about tangible support mechanisms that are currently missing for disabled parents, such as adequately trained medical professionals in prenatal classes, accessible playgroups and the spaces needed for disabled people who wanted kids, but couldn’t have them (for a myriad of reasons specific to disabled lives).
There’s also much more that must be done when it comes to the ways we talk about - and treat - disabled motherhood but for now, I am at least feeling galvanised. I am feeling supported, and perhaps I am one step closer to my own motherhood journey. I may not be working with children anymore, but the piles of picture books I collected during my nannying days and teaching degree are stored safely in my mum’s attic, waiting for the day that I can break them out again... to read to my own children.
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