Emilyn

Parenting with MS: Advice from two mums who understand

We know that as a parent sometimes simply making it through to bedtime can be a cause for celebration.

If you’re living with MS, parenting can be particularly tough and you can need a bit of extra support.

We spoke to two mums with MS, Katie and Moyna who share their advice and experiences of being a parent with MS.


How to talk to children about MS 💬


Talking to children about MS can feel daunting. You might worry about how they will react or what words you should use. It’s important to remember that you know your child best, so you can judge what is appropriate. Children can often be more resilient than many adults.


Katie’s daughter is nine and Katie recommends being open and allowing children to be curious.


“We just drop non-scary things into the conversation. We normalise it, rather than treat my MS as something hidden and shameful. She’s allowed to ask any question that she has, at any time and I answer them as truthfully as I am able to, in an age appropriate way.”

For younger children it can be more appropriate to talk about how your symptoms are making you feel.


Moyna uses this technique for her son who is three: “I explain to him that mommy is extra tired today.”


Doing this helps a child understand exactly what’s happening, even if they’re too young to understand what MS is.


Managing life around symptoms 💤


Fatigue

Being a parent is exhausting for a healthy person, so dealing with fatigue is unsurprisingly, the most common challenge for parents with MS.


“MS has made parenting very difficult. I experience a lot of fatigue daily. Some days it feels like I cannot get out of bed. I'm falling asleep even though I woke up recently. My fiance takes on most of the parenting those days”. Moyna explains.

Katie made specific decisions when her daughter was a baby to help her cope.

“I used to go to bed at 8pm to get enough sleep before the night time feed happened.  My husband took over until midnight, when he would then go to bed.  

This gave me 4 uninterrupted hours to sleep before I needed to get up to feed the baby. I also chose not to breastfeed, so that the care and feeding of our daughter could be shared”

MS triggers 📣


It is important to plan your activities around any triggers that you know about.
For Katie, this is noise.

She experiences sensory overload in noisy environments. This means that she coordinates with her husband to avoid places that might trigger her symptoms. “Soft play and parties are best avoided!  My husband does all the parties (mostly) and I only went to soft play centres when they were reasonably quiet.  Or took ear plugs!”


You can also work to find activities that work well for both you and your child. Katie explains:

“As my daughter gets older, I make sure that there are lots of different activities available for her to do in the house that aren’t necessarily physically demanding for me. Usually my brain is ok, even if my body isn’t too good (although not always!).”


Planning and communication are key! ✔️


Everyone knows that planning with MS isn’t always possible, and that the unpredictability is difficult to cope with.


Moyna says this is one thing she wished she’d known sooner about being a parent with MS.

“Not every day will be the same. Some days are great, and I feel amazing. I can play with my son, and we have a lovely day. Some days are not so great, and I feel sick. Or my son is not behaving while I have a flare. I'm learning to take everything in stride.”


Both Moyna and Katie advocate for open communication with your partner or support network. This helps you to manage when you’re having a bad day.


“I have found that open communication with my partner has helped. I keep him updated on how I am feeling. Once I am feeling better, I take over parenting and let him rest.” Moyna said.


Supportive families and friends 🧑‍🤝‍🧑


It is true that for any parent, having a strong support system is important. Katie and Moyna both emphasise this.


“I have a good network around me and we all help each other out. This isn’t just essential for those with MS - it helps everyone with children!”  Katie said.


Moyna echoes this saying “Lean on the people around you when you need it. They say it takes a village; some days, it may feel like it takes a country. That is ok, do not fall into self-pity. Chronic illness is complex, and it's ok to ask for help.”


It’s important to be specific in your requests too, Katie advises,


“Tell people what you need.  Explain how they can help you.  People who love you will want to help - in the same way you want to help those you love”.


Final advice for struggling parents 💜


Moyna was diagnosed with MS when her son was a baby and acknowledges how challenging it can be.

Take it day by day. I know it's hard, and some days, you feel like hell! Understand that not every day will be the same. Power through the rough moments the best you can.”


If you’re considering becoming parent, Katie reassuringly says:

“It’s ok and totally do-able.  Both my husband and I were so scared about what having a baby would mean for my MS. We nearly didn’t do it! But I am so glad that we decided to take the plunge and enter the unknown.  It’s given me so many more reasons to look after myself and my health as best I can. My daughter inspires me every day to be the best version of myself that I can possibly be.”

About Katie and Moyna


Katie lives in the UK with her husband and nine year old daughter. She has been diagnosed with MS for 17 years. Katie shares her experiences with MS to inspire and empower others ✨
Instagram: @ms_is_my_superpower


Moyna is a 'Chronically Fabulous Writer' and lives in the USA with her husband and three year old son. She was diagnosed with MS in December 2019 💜
Instagram: @lifewithmoyna
Website: https://lifewithmoyna.com/


Where to get more advice and support


If you need some extra support or advice about parenting here are some resources for you:


The MS Society US has created Keep S’Myelin which is a whole pack of resources and activities to help children understand MS.


Digesting Science has been put together by the team from Barts Hospital, UK. It’s a set of interactive activities that teach 6-12 year old children about MS. It’s focused on explaining the science around MS in an understandable way.


Child psychologist Lisa Happ gives tips on talking to children about MS

Teenagers can sometimes need a different approach. This guide aimed at teens includes excerpts from interviews with young people whose parents have MS and offers advice on how to cope.


Meet other parents with MS or chronic conditions. Meeting other people who get MS and understand can be really valuable. Look for groups in your area organised by your country’s societies. There are also Facebook groups dedicated to mums with MS if you find it easier to do things online.


For some quick fire advice, check our “Being a mom with MS: 12 parenting hacks