Mum guilt is real, especially for those of us with MS

Hannah Morris on how feeling guilty about your kids is only intensified by a condition like MS

I recently confided in a friend because I was feeling pretty fed up of not having my own space any more thanks to the COVID-19 lockdown. I love my kids to bits. I’d do anything for them, really I would, but I also need a bit of my own space and peace each day too.

It felt wrong to have such feelings towards the very children that I have given birth to. I had reached a point of frustration that I just needed to get it off my chest. And, at such a low point for me, I needed that shoulder to cry on. Her first response was ‘mum guilt is real’. I had never heard of this term until this moment, but it made so much sense.

What is mum-guilt?

There are so many reasons why we mums experience overwhelming feelings of guilt. To name a few...

• Guilty for not giving our children what they need
• Guilty for not doing what we feel we should be doing
• Guilty for wanting a break from it all

Most mums experience this to some extent at some point, but for people with multiple sclerosis (MS) these feelings can be exacerbated further as a result of some of the symptoms of MS.

Examples

For me personally, there are three symptoms in particular that have an indirect effect on my level of mum guilt – cogfog, sensory overload and fatigue.

• Cogfog. I often forget things that I have promised my children and that can make me feel like a failure as a mum sometimes, especially when it is something that means a lot to them, or they are relying on
• Fatigue. On some occasions, I simply don’t have the physical or mental energy to engage with them as I’d like to. I feel particularly guilty towards my youngest two, that I had after my diagnosis. I had so much energy for my oldest three and I feel bad that I can’t give the same kind of energy to my youngest ones
• Sensory overload. This has only become a significant issue in recent times. Having five children at home with me 24/7 has meant living in a very noisy house from morning to night which makes me get noticeably agitated at times, forgetting that they’re just children and children make noise! I feel terrible for trying to take that from them for my own benefit. It makes me feel selfish

How to help yourself have a break from this feeling (practically)

Firstly, let’s begin with how not to do it. For me, my mum guilt has been particularly noticeable at this time because I’m with my children 24/7 without the usual break that I get when they are at school in the day. Without that natural break I sometimes find myself staying up late just to get that peace, which of course had the knock-on on effect of increasing fatigue and grouchiness the next day!

In open discussion with other mummies with MS I’ve learnt some great practical tips from them that can help to reduce the impact of common MS symptoms impact on parenting and therefore reducing the level of mum-guilt as a result.

• Teach them about your MS so they don’t think it’s something about them
• Help them to help you by learning to keep themselves occupied when mummy’s tired or having a hard time with her MS or getting involved in helping mummy with tasks she is struggling with
• Plan ahead so you are not too exhausted on other tasks before a planned task with your children

How to help yourself have a break from this feeling (emotionally)

• Forgive yourself. You’re doing your best!
• Don’t compare yourself to others mums (especially other mums from the playground who don’t have MS.)
• Talk about it. I did, and it really helped. It was great to learn tips from other MSers that I’d never even thought abou
• Ask for help from your spouse, friends or family either with engaging your kids in the things that you’d like to, or otherwise in tending to matters that may otherwise prevent you from engaging with them yourself

As my friend said, ‘mum guilt is real’ and it truly is, especially for those of us with MS who have additional challenges to manage too. It’s not easy, but there are ways that we can make things easier for ourselves.

My research

As part of my research, I am hoping to support others in the same situation and invite you to join me in this endeavour by having your say in what would help you.

If you are happy to help out then you can complete this online survey here by clicking the ‘start’ button at the bottom of the page.

Or you can go directly to the survey by clicking here