Parenting with M.E.

01st December 2023

Single mother and M.E. sufferer Joanna Stone shares her experience and advice.

“How am I supposed to do this?”

It’s a refrain I see frequently on social media, where parents with Myalgic Encephalomyelitis – usually women, sometimes with very young children – are reaching for help, maxed out by the dual burdens of parenting and being ill without enough support or relief. I’m in a crash. I can’t cope with the demands. I can’t get out of bed. I’m killing myself just to feed them and keep them safe.

I feel it. As a parent with M.E. you don’t have the chance to pace optimally, and sometimes you do have to push through knowing you’ll pay for it later. I was lucky to be mostly well through the earliest years with my kids – although looking back, the signs were there. I was diagnosed with M.E. in 2019 just as legal arrangements finalizing my separation from my boys’ father were completed. Two massive bereavements in under two years left us in an uncharted and difficult new reality which I have been grappling with ever since.

The mother I wanted to be? Long gone. My children will never know her, or even remember me as I was when I did ten-mile walks, swam front crawl by the mile, or even just rode a bike alongside them.

It was worst in the beginning, when the sensations in my body felt terrifying and unfamiliar. In those days my alarm would startle me at 7am and I’d blink at the grey walls, stomach sinking as I became brutally aware that I was awake, again. I would cry bitterly as I dragged myself out of bed to begin yet another miserable day, reduced to a bleak shadow of myself who could barely manage the routine tasks of living, before wiping the tears away and going to wake my children.

Viral illness is a big trigger for me, so running the gamut of childhood sicknesses – especially with Covid-19 in the mix – has been truly challenging and repeatedly sets back any recovery. Any parent can tell you how grotty it is to look after your sick children when you are sick yourself. This year there wasn’t even a summer respite: instead, I suffered a serious relapse into being housebound after contracting some sort of flu in August. I’m only just in sight of my baseline again now. What for others is a passing inconvenience can be a week’s worth of misery for me; it used to be two to three weeks. The compound effect means that by the end of cold and flu season pain, fatigue and inflammation are daily battles and I am often struggling to keep everything afloat.

Living with M.E. is a life of constant concessions. Parenting with M.E. doubles down on this and although I’m classed as “mild” there are many things that I have had to let go. Financial independence, dating and hoping to find someone to love and live alongside me, most socializing, voluntary roles in my community, travel, a steady job. I keep trying. I’ve been studying to become a counsellor, hoping to work meaningfully on easing the psychological burden of chronic illness for other people like me, but needed to defer this year’s studies because of the relapse. I’m not even certain I have the energetic resources to qualify, but intend to recuperate and try again anyway. I feel fortunate that I can afford time off at all but being thrown back into that small space – feeling the world shrink around me again – is tough on my self-esteem and efforts to be a good role model for my kids. I feel the shame of being sick and single painfully in a society that both disparages me and expects me to be a shining beacon of strength without supporting my shortfalls.

I think everyone with M.E. carries a deep fear of becoming worse. A close family member was diagnosed with ‘Long Covid’ earlier this year and is now bedbound, being cared for full time. Even to my relatively informed eyes, watching their decline has been shocking. Parenting with M.E. forces me to live up close and personal with the knowledge that I, too, could decline like this and of what is at stake.

But you have to live with hope, if you have M.E., and it’s not all bad: my kids are wonderful and I love them in a way that I have never loved anyone else. Even I am often surprised at how resilient they are when new challenges arise. I worry about how having a sick mum impacts them – and they will carry that through their lives – but also observe how they are kind, empathetic, and caring kids, probably, partially, as a result. They are conscientious and good citizens. We have fantastic conversations and strong relationships with one another because we spend so much time together.

As the boys get older, it is easier to send them out with friends and cultivate their independence. I let them know that they will not be in this situation forever: that everything changes, that they grow every day and soon they will be able to choose where they go for themselves. They will be able to drive a car, catch a train, get on a plane, go, be, live. I hope that this independence will also create more space for me to care consistently for myself, away from the demands of others. Every energetic minute I get to myself I chase that goal by exploring anything that might help me reach it. In the back of my mind, I pray quietly that my boys will never need that knowledge themselves.
Here are some things that I have learned about how to parent with M.E. – I hope that they might help you too. Take whatever nuggets and principles you like and make them your own.

Remember that children love unconditionally

If your children are young it is unlikely that they are harbouring preconceived expectations of you or judging you as you might be judging yourself, or as other people might be judging you.

If your children are older and struggling with your illness: I don’t believe that we ever really “lose” a bond of love between parent and child. Sometimes we just need to find our way back along it using communication and empathy.

The most important gift we can give is our attention

Many parents are forced into lives which are made unrelentingly busy by meeting external demands commanding their time, focus and energy. Can’t do this right now? Fantastic. Leave it all behind and offer your children as much of your attention as you can in whatever format works for you: a trip to the corner shop on a good day, stories before bedtime (I use a cough sweet to help with throat strain), cuddling up to nap together (bonus!), regular chat and catch up, movie nights where rules about snacking before bedtime are abandoned.

Communicate

I’m a massive advocate of honest communication and I’m pretty straight with my kids. Try and frame explanations in ways that are age appropriate and factual. I think – especially with older kids – that it’s ok to explain a bit about the feelings you may have around your illness, but be very clear that you don’t expect your children to do anything about those feelings because that’s not their responsibility.

Check in with your kids about how they feel if you sense it’s necessary – they are living through this too. Keep communication open and receptive, and make space for whatever feelings they have. Seek advice from a counselling or youth service if you need help communicating with your kids – we all do sometimes!

Definitely be straight with the adults around you – they are responsible for their own feelings. Ask for reasonable adjustments: school might be able to offer Zoom for parents’ evening rather than attending in person; family and friends should be helping out rather than being waited on.

Get support

Don’t slog through with your sense of pride as a fig leaf over your struggles. Lean on anyone who can support you – family, friends, school, communities like church groups, the welfare system, doctors, everyone. Those who can take one moment of effort off your shoulders are a) worth their weight in gold; b) giving you back time for your own well-being; and c) teaching your children about the value of showing up for others.

If you’re like me – no partner, no family nearby – you are going to have to reach a little further and feel a little more uncomfortable. Ask anyway.

Get support, part 2: don’t get lonely

It’s difficult to take care of your own needs while caring for others and reacting to constant demands. Social connection is a huge part of our overall health. Reach out. Ask friends and family to proactively check in on you to remind you that there are people who care for you, too. They can feel quite powerless and it can be a relief to know that something as simple as calling for a chat or dropping in for a cuppa is helping you out.

I also think online communities offer a lot of value across the spectrum of M.E. Find one that works for you, and talk to people who really get what you’re going through.

Balancing your needs

This can be very difficult, and I really struggle with it myself. But the truth is that you are the hinge in your family, so your needs need to be met. This can just mean keeping activities that you do with your children within your own limits as much as possible. I recommend reading A Self-Help Guide to Managing Myalgic Encephalomyelitis.

In a wider sense, practise the fine art of saying no. Let other people deal with their own stuff (the PTA, sibling squabbles, work dramas) and focus on yourself and your children. You can always circle back around to offer support after the heat of the moment has passed, offering what you can.

Calm and quiet does not equal bad!

I love a house full of life, so this may seem more obvious to you than it did to me, but making your home a safe, quiet space is no bad thing. Make home a place of rest, where everyone can have a break from the hustle and bustle of the outside world.

Reframe, Reframe, Reframe

Spend some time turning your perceptions on their head and try to cultivate a positive narrative for your family. What can you teach your children, even from bed, even in a darkened room, even for a few minutes a day? Can you tell them that they are loved? Can you teach them hope, and endurance? Can you normalize illness as a part of life that everyone experiences? We seem to have lost this message somewhere: people who are out in the world seem to chug along without a care, but if you speak to them you will quickly unveil that this isn’t the truth. How about turning sleep into a luxurious activity everyone looks forward to indulging in, instead of something to feel guilty about?

Take credit

You’re probably doing better than you think you are. Remember to take credit for your successes and celebrate them with your kids – reinforce the positive times to help balance out the hard ones. You might find scrolling back through your camera roll to relive the activities you did manage helps lift your mood on a difficult day. You were there, you did try, and you did succeed.

Let it go

Don’t force normal, and don’t insist on things being or looking a certain way. M.E. is a very challenging illness. Don’t waste precious energy on what you cannot control, spend it on what you can, even if this is just your mindset from one day to the next.

If you’d like to see an adult child of a pwME (person with M.E.) speak about their experience, I recommend Raelan Agle’s video on YouTube, which was both honest and reassuring.