Parenting is hard – and harder when you’re sick

‘YOU HAVE this gorgeous child, who wants to play and have fun with you, and you’re dragging yourself around, trying to make it through the day.” This is how mother of one Linda Murray describes parenting while having adenomyosis and endometriosis, whereby cells similar to the womb’s lining grow in the muscle wall of the uterus and outside the uterus. Symptoms include fatigue, severe pain, and fertility problems.

“Exhaustion is the real issue for me, my most relentless, debilitating symptom,” says Murray, 46, from Monasterevin in Co Kildare. While some days are better than others, the fatigue feels constant. “Like a feeling of ’flu in your body, in your muscles and bones, like you’re coming down with something, and it’s all the time. Most people start their day on a good battery. I feel my days start at 10%.”

Diagnosed with severe endometriosis at 33, Murray was deemed highly unlikely to ever get pregnant. “I couldn’t believe it when I did. My husband, William, and I were over the moon.”

Ellie, weighing under 4lbs, was born five weeks early by emergency C-section, due to acute feto-maternal haemorrhage. “It was touch and go for the first few weeks, but she was such a fighter. She was born deaf and had cochlear implant surgery at 18 months. She hasn’t stopped surprising everyone since. She’s full of life, chatty, stubborn, and has taught us [so much] about strength.”

Linda Murray with her daughter Ellie at home in Monasterevin, Co. Kildare. Photo: Alf Harvey.

Murray believes she’d have been a different parent without her medical conditions. “I feel I missed out on parts of motherhood: The day-to-day enjoyment of having a child, the rough and tumble, chasing her around. I feel Ellie didn’t always get the mother she deserved.

“I’ve always done my best, but, sometimes, my body doesn’t co-operate — by midday, I could feel like going back to bed. It’s hard to accept, because the wish is there, to be present, soak up every bit of the experience.

“Parenting a child with extra needs, you need to become researcher and advocate, attend lots of appointments, give lots of time to homework. That, in itself, is taxing, but when you’re already dealing with [chronic illness] it can be overwhelming.”

Murray, an employee engagement manager with TU Dublin, feels hugely supported by her husband and work colleagues. She has reconnected with her creative side, joining a choir, and she likes short woodland strolls.

“That brings a feeling of energy — it’s something Ellie and I can enjoy together. Enjoying the simpler things has helped me parent better, helped me remember that I’m more than my illness.”

Ellie, now 11, was eight when Murray told her “properly” about her endometriosis. “Children are so intuitive — her deafness means she’s very attuned; she’d see things in your face you wouldn’t even be aware of. I could see she knew I wasn’t well, that she was worried about me. I wanted to reassure her that, though I’ve a chronic illness, I’m not going to end up in hospital; she’s not going to lose me.

“I think she was relieved. She used to say, ‘Oh, you’re always tired’. Now she knows my tiredness isn’t me fobbing her off.”

Orla Marron who has MS is mum to Katie (10) and Kyle (12). They are pictured in her parents garden outside Carrickmacross, Co. Monaghan beside her Father Brian’s favourite tree. Orla’s Mother, Angela also has an MS diagnosis. Photo: Lorraine Teevan

A mum with multiple sclerosis

Diagnosed with multiple sclerosis (MS) in 2017, aged 30, Co Monaghan-based mother of two Orla Marron has always been aware of MS, because her mother has it, too. (MS is not directly inherited from parents, but there is a genetic component.)

Married to Christopher, Marron only told her children, Kyle, 12, and Katie, 10, last year. “They were four and two when I was diagnosed. I didn’t tell them then, because their first vision would be granny with MS and mum’s in a more severe state, having had MS for 30 years.”

Marron, who found a treatment that stabilised her condition three years ago, has huge family support. They always helped out on her bad days. “That was a huge relief.”

But parenting with MS was “emotionally very hard”, particularly when the children were young.

“During the Beast from the East in 2018, I remember looking out at them from the kitchen window. They were playing in the snow, and I was just not in a good way, and I’d have loved nothing more than to be out there with them.

“To them, mammy was boring, lazy, no fun, and daddy was great craic. Emotionally, that was hard. It’s still hard on days I’m not able to do the fun things with them. Sometimes, Kyle will say, ‘Do you not want to come out and play football with me?’ — simple things that to a child mean a lot.”

Receiving treatment by infusion every six weeks, Marron is thankful she generally has four to five “good” weeks, though when approaching treatment she feels fatigued and it takes time to recover.

She has given up her job in banking to focus on her health: Mindfulness, reflexology, and daily exercise are all part of this.

“I drop the children off at school and I do either mindfulness or exercise. I’ve energy [in the mornings], but I don’t want to waste it. I need it for when they come home from school. It’s a balancing act.”

An MS Ireland Readathon ambassador last year, she decided then to tell her children about her condition. “It was coming anyway: They were asking more questions. Their first reaction was, ‘You’re going to be like granny’. Mum is secondary progressive 1762218968 and sometimes in a wheelchair. I said, ‘No, years ago when granny was diagnosed there weren’t many meds to help her’. I explained that there are lots of different medications now, and I’m on a really good one that’s working very well. And that was sort of it… It all fell in to place: I was able to explain why some days mammy is tired, and they understood, ‘It’s not that mammy didn’t want to play with us — there’s a reason’.”

Impact on the child

According to the 2022 Census, 16% to 19% of 20- to 49-year-olds have a long-lasting condition, and a substantial segment of this age range will likely be parents. Psychotherapist Bethan O’Riordan says chronic illness impacts parents across life: Physically, emotionally, logistically, and mentally. She says parents worry enormously about the impact on their child and feel loneliness about the gap between their limited possibilities and how “mainstream parents seem to be able to get on with it”.

Chronic illness also creates extra work around organising contingency plans for days they feel very unwell, “a back-up plan for how to get children to school, home from school, fed”. O’Riordan says what children need most from parents is a consistent presence, the parent tuned in to the child’s needs.

“For a child, feeling safe and secure isn’t about being taken here, there, and everywhere: It’s about that connection between them and the person who cares for them most.”

O’Riordan urges parents with chronic illness not to compare themselves to other parents and, instead, recommends strategising more.

“Ask what are you able for? And present this to your child as things to do. Resist pushing to keep up — be very realistic about your own limits. It’s important to teach children, ‘No, that’s not for me, that doesn’t suit me’.

“And with chronic illness, it’s important to say, ‘I can’t do this right now, but I can do this, instead’.

“Ask yourself, ‘Can I create a quieter life that suits my needs?’ When my needs are met, I can be the parent my child needs. Ask: ‘How can I have fun with my child? How can I enjoy them? Playing with bubbles, watching TV together, listening to music, telling stories?’ ”

O’Riordan encourages finding “a realistic good enough”. This means being very courageous in cultivating a compassionate part of you that knows this illness is not your fault. “A compassionate part that’s also really committed to finding the life that’s realistic for you.”