Handling the daily challenges of being a parent with chronic illness

The daily challenges of being a parent with chronic illness

guest post by Emma England of NotJustTired.com

Being a parent is wonderfully rewarding, and something I feel it to be a real privilege.

However, parenting certainly comes with its fair share of challenges, especially when you’re also living with a chronic illness.

Many chronic illnesses are also invisible, so no one can see just how much of a struggle it can be.

We often look fine on the outside, but feel quite different on the inside!

In this post I discuss some of the challenges of being a parent with invisible illness that I experience on a daily basis. I will also share some of my tips for coping with these challenges.

The type of illness you have, the severity of your condition, and the age of your children, will have an impact on what your challenges are.

I live with moderate ME/CFS, and my condition can fluctuate on a day-to-day basis. Some days my symptoms may be mild, and I can do more, whereas other days they can be more severe and I’ll be stuck in bed.

My son is now three and a half, and as he becomes older, my parental “duties” need to adapt through each developmental phase.

When he was a baby, he was very dependent on me for everything, and my daily tasks would revolve around feeding, nappy changes, sleep (or lack of it!), cuddles and simple play.

One of the hardest stages for me was when he started learning to walk (around thirteen months), and it meant he needed me to follow him around everywhere as he found his feet!

Now he’s older, some things are easier as he’s become more independent and can do things for himself.

He can feed himself, put his shoes on, play alone (although he still likes to be entertained too!), and ask for what he needs.

However, this age can also be physically and mentally demanding for us “spoonie” parents!

Children become more active, want to visit more places, need stimulating as they’re learning so much, and becoming very inquisitive (e.g. asking “why” a lot!). There is very little peace and quiet!!

It’s truly a wonderful experience to watch them grow, develop and become so fascinated with the world around them. However, as a chronically ill parent, it’s tough going when your body and mind struggle to keep up.

Coping With The Challenges of Being a Parent with Chronic Illness

Here is a list of some of the day-to-day challenges of being a parent to a little one while living with an invisible illness. I’ve also tried to include some tips for coping with each of these challenges.

Getting out and about to do activities with your child is tough going.

We look fine a lot of the time, and outwardly appear to be like any other “normal” parent, taking their child to the library, park etc.

However, please remember that the days that you see us out, will very likely be our good days, and it will have involved a lot of planning to get out in the first place.

We will often be smiling and enjoying time with our children, but behind all this we will also likely be in pain and suffering.

As a parent with chronic illness, I'm often smiling and enjoying things, but that doesn't mean on the inside I'm not in pain and beyond my last spoon. #chronicillness #spoonielife #chronicparenting Share on X

Tips for getting out and enjoying activities with your children

Keep visits short and plan activities that are manageable for you.
Plan time to rest before and after activities.
Remember that you don’t have to go far to have fun!

Doing the nursery drop off/pick up (or school run for those with older kids) is exhausting.

For me, a nursery day, is time to rest and hopefully recharge a little, but I still have to get him there in the first place!

By the time you’ve got yourself and child up and ready, had breakfast, and packed their bag, you already feel those “spoons” sliding away.

Tips for getting the kids off to school when fighting fatigue

If it’s available, ask for help with drop offs/pick ups. On Fridays, my husband works from home, so he takes our son to nursery. If I’m still struggling later in the day, he’ll try and do pick up too. I just need to remember it’s ok to ask!
When help is not available, try to organize as much as you can the night before so you don’t waste energy!
- For example check the weather forecast so you know what clothes will be needed, pre-plan an easy breakfast etc!
Make sure you rest plenty before pick up.

Tasks that would usually be simple, become difficult as a parent with a chronic illness.

Things such as bathing your child or lifting them into their car seat requires a lot of spoons. Not being able to do these tasks can knock your confidence too.

I have always needed my husband to help with bath time. I simply don’t have the energy to manage it on my own, and as it’s an ‘end of the day activity’, my spoons have pretty much ran out.

When my son was younger, I’d let my husband or sister help lift him in and out of his car seat, when they were around. It’s important to save those spoons whenever possible!

My son can now get into his car seat himself which is a relief!

Tips for managing difficult parenting tasks when you have chronic illness

Ask for help. Don’t battle on trying to do things on your own. Yes, it involves swallowing your pride a lot of the time, but it doesn’t mean you’re not a good parent. In fact, it’s being a better parent, by stopping yourself from overdoing it and saving energy to be able to do other things!

We have to say “no” to doing a lot of activities we would love to do with our child.

This is one I find particularly hard. There’re so many things I would love to be able to do with my son, but I simply don’t have the energy.

Managing my time looking after my son would also be so much easier, if I could just hop in the car without a second thought, and take him to soft play centres, swimming, playgrounds or visiting friends with children.

It also makes me sad when he wants me to dance with him, or engage in active play in the garden, and I always have to consider how much energy it’s going to use up.

As someone who was previously very fit and active, I find it hard that my body can’t easily manage these things.

Tips for saying no to activities with your children

Create a list of fun activities you can do at home, or without having to travel far.Before illness I would never have imagined I’d be the kind of Mum who was into craft, simple baking, planting seeds etc! I would have been too busy running around parks and “doing” activities!However, these simple activities give us both so much pleasure, and allows us to make some lovely memories too.
If you have a partner/relative/friend who helps out, then let them do some of the more physical activities with your child.

We constantly struggle to ensure our children don’t miss out because of our illness.

Invites to birthday parties, play dates, nursery stay & play sessions etc, cause us a certain degree of worry, as we try to work out how we can manage these, so our child doesn’t miss out.

As fellow spoonies will know, it’s also really difficult to be able to plan things in advance as we never really know how we’re going to feel from one day to the next.

Tip for managing your children’s activities without burning your energy

If you have a supportive partner or relative, ask them to help out. I find birthday parties exhausting, but I like to go along for a bit if I’m about to manage it.On these occasions, my husband comes with me, so I can dip in and out of the party to grab rests when I need them. Other times I’ve not been able to manage to go at all, and he’s taken my son for me.My sister also kindly took my son to his nursery end of year party.It’s tough as a parent to have to miss out on these things, but I feel so grateful for the help that is offered, so my son can still experience them.

It's tough as a parent to miss out on things because of your illness, but sometimes there is no choice. Share on X

We often have to push through our symptoms just to get through the day.

We have to choose how to spend our spoons, and accept that we can’t do it all. For example, if I need to cook dinner, then I will have to say no to doing another activity.

Tips for pushing through your symptoms and getting through your day

Plan in some quiet time with your child. Don’t feel guilty (I often do, but I know I shouldn’t!) about sticking the TV on for half an hour whilst you grab a rest. We need it to recharge!
Plan in rest and recovery days when possible. My son going to nursery a couple of days a week, and my sister helping on another day, allows me to manage my week as best as possible.
Make things easy for yourself. If making a really easy dinner, means that you have more energy to play with your child, then that’s all good!

Weekends are often spent resting & recovering to manage getting through each week.

For those of us lucky enough to have supportive partners, they usually have to take on a chunk of solo parenting at the weekend. Resting is no fun when you want to be joining in with family activities, but it’s absolutely essential.

Tip for managing self-care as a parent with chronic illness

Don’t feel guilty about taking the time for essential self-care. It’s for the benefit of you and your family. The more we rest, the more we can hopefully manage to do!

We have to learn to accept help.

As most of us living with chronic illnesses know, asking for help and accepting it, is not easy. Especially when we were previously independent, energetic people who took pride in our achievements.

We also don’t like to feel like a burden to others. However, as a parent with a chronic illness, I must accept that I can’t do it alone.

As a parent with chronic illness I have to accept that I can't do it alone. #chronicillness Share on X

I’ll be honest and say that it took several counselling sessions, for me to come to the conclusion that my son spending some time at nursery would be a good idea. I wanted to spend as much time as possible with him, but I had to accept my limitations.

Tips for accepting help

By accepting help and giving ourselves time to rest and recharge, it means that we have so much more to give to our family.I can now fully enjoy the time I have with my son, without feeling completely wiped out. It also means that my son is more adaptable and gets to enjoy time with his Dad, Auntie, and friends at nursery!

I’ll end by saying that there is still so much joy to be experienced as a parent, despite our illnesses. We just need to adapt the way we do things, and accept that our “normal” will likely be different to other families. I hope you found this useful, and I would love to hear any comments you may have!

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About Emma

I’m the author of the blog “Not Just Tired.” I’ve been living with ME for the past five years. I have a wonderful husband, and I’m a Mum to our beautiful three year old son.

I blog to raise awareness of ME/CFS, and share ideas on how to live as well as possible with chronic illness. I write articles on health, well-being, parenting, gratitude, nature and the daily challenges of life with a chronic illness.

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