Parenting while struggling with a chronic illness is something not many people talk about. Partially because many people might not relate, the lack of awareness can sometimes make it hard for others to understand.
However, for those with a chronic illness, parenting can become even more challenging. It introduces an added layer of difficulty that many people may not fully understand.
Since childhood, I have struggled with chronic pain that has worsened as I’ve gotten older. Over the years, other conditions have joined in: debilitating migraines, extreme fatigue, and more. On really bad days, it can be incredibly difficult to juggle family responsibilities, let alone perform simple tasks.
I know that if you suffer from a chronic illness, you can relate to the struggles that come with feeling… almost disabled at times. In reality, on some days, we essentially are.
Struggles that accompany chronic illness
People may think that dealing with the symptoms is the worst part, and sometimes it is. However, surprisingly, the worst part is often the emotional toll on the days that you are completely out of service.
When you are a parent, you have to be “on” most of the time. A child will always need help with something, laundry and dishes always need to be done, food has to be made, and children will constantly require your attention to play or tell you a story. This can feel almost impossible when you’re constantly feeling unwell. It can leave a parent feeling as if they are failing.
Here are some of the most common things that parents with chronic illness struggle with:
- No energy: I am not talking about simply feeling tired. No amount of sitting or resting will help you feel better when you are having a bad day. It stinks. Even though you know that you are unwell, this particular symptom can be very hard on overachievers. The feeling of staying still can make someone feel as if they are being lazy or useless.
Although this is not true, not being able to make a bed, clean the dishes, or prepare a good meal can be devastating —especially when you need to sit down and rest between tasks. This can be very difficult to manage.
- Feelings of uselessness: When you have so much to do and things you WANT to do, but ultimately can’t, it can be very disheartening. That’s when the feelings of uselessness creep in. You might think to yourself: “How come I can’t even do this simple thing?”, “This isn’t even hard — I suck”, or “I can’t do anything”.
If these thoughts have crossed your mind, you’re not alone. Even though you know that it’s not your fault and that you need to slow down, it would still be very difficult to process. Especially if you have people around you who do not understand what you are going through. Some may even make comments to indicate that you are lazy or weak.
- Depression: According to WebMD “the risk of chronic illness and depression gets higher with the severity of the illness and the level of life disruption it causes. The risk of depression is generally 10-25% for women and 5-12% for men. However, people with a chronic illness face a much higher risk — between 25-33%.” (Bhandari, MD, 2024)
When a chronic illness significantly inhibits your daily activities, it increases the likelihood of developing depression. The person may feel isolated and helpless at times. It can be very hard to watch the world go on while you struggle to catch up. People may begin to feel as though they are missing out on their children’s lives and are unable to create important memories together.
- Cancelling plans: It is heartbreaking when you cancel plans often. People may begin to think that you don’t want to spend time with them or be part of the important moments in their lives. Unfortunately, canceling plans becomes inevitable.
It is very hard to tell when a bad day will make their entrance. People who struggle with chronic illness know this very well. We know what it’s like to wake up feeling fine, only to be very sick once the afternoon rolls around. It’s unpredictable and heartbreaking.
However, this does not mean that we don’t want to be out and about with our loved ones, or that we don’t want to partake in their important moments. It’s just that sometimes, our bodies can’t keep up.
How can we make it better
Unfortunately, chronic illness cannot be cured. It can, however, be managed with lifestyle changes and medication. Additionally, there are many other strategies that are extremely helpful in managing it and helping you get through each day feeling better about yourself and everything around you.
Below are 11 tips you can start doing today.
1. Enjoy the good days
The bad days are tough, not only physically but mentally as well. You watch the days pass by, and your children grow up with each passing moment. It’s hard sitting on the sidelines, unable to be a part of everything.
This is why you need to embrace the good days and make the most of them. These are the days that help you to move forward. They recharge your battery, allowing you to hang on during the difficult times.
There’s a YouTuber named Martina who suffers from a chronic illness, who I used to watch often. She said something that has always stuck with me. She talked about building a ladder (figuratively). It meant that during the good days, you collect positive memories and experiences, creating a ladder to lean on. When the bad days come, you have that ladder to help you climb up.
Building my own ladder has been one of the things that has helped me stay positive and enjoy every good moment to the fullest. Because when the bad days come, I still have something good to hold on to.
2. Involve your family
Talk with your family and make sure everyone understands your limitations. If everyone is on the same page, it’ll make everything much easier for the entire family.
Include your children in the conversation as well, even the youngest one in the house. The key is to keep the conversation age-appropriate and avoid oversharing information that might be too much or potentially scare them.
It’s okay to let the family know that there will be days when you won’t feel well and won’t be able to take care of things around the home as you usually would. Doing this will make things much easier for the entire family because everyone will be prepared, know what to expect, and understand how to help.
In my house, the children know that on bad days, mom isn’t able to do much. So, they only ask for things they can’t do on their own. They also look after me, even when it’s not needed. They’ll come around and ask if I’m ok or need anything. They are the sweetest.
3. Make a plan
Everyone must know what to do on the days when you’re not feeling well and are “out of service.” Everyone can be involved. It’s ok to let the family know that on the bad days, everyone needs to pitch in a little to help the house run smoothly — and sometimes, to help you too.
Tailor your plans according to your family’s needs. Everyone needs to know what responsibilities they have and how to carry them out. Trust me, this is a lifesaver.
Keep in mind that it can be more challenging if you have very young children. But you and your family can create a plan that best works for everyone.
4. Always have easy-to-make meals
Frozen foods, leftovers, and any other easy-to-put-together meals are a must!
I have the habit of cooking more than we need because I can pack up the leftovers for the inevitable day when I won’t be able to cook. This has saved me countless times; as well as having frozen meals, waffles, eggs, and simple ingredients to make a sandwich.
Something simple that you can whip up without much effort is a Godsent. Everyone can be fed, and you don’t even have to overexert yourself. Furthermore, if your kids are older, it’s even easier because they can warm up the food themselves or prepare a bowl of cereal if they’re hungry.
5. Lower your expectations
*Sigh* If you are a type A person, this can be very challenging. But you have to do it. Lower your expectations for how much you want to get done daily. If you don’t, it will make you very unhappy and you’ll live perpetually frustrated.
Instead, prioritize.
Figure out what NEEDS to be done and what can wait until later. If you have a full basket of dirty laundry, prioritize which load needs immediate attention and which one can wait. Perhaps the color clothes are more important because you have nothing to wear, but you have enough socks and underwear, so the whites can wait a few more days.
Complete the tasks that can’t be pushed back, such as cooking, doing the dishes, or loading the dishwasher, etc.
Don’t try to do everything all at once. It will only make things worse in the long run—not just for your body, but also for your mental health.
6. Accept help
If you need it, accept the help from the people who love you. Also, ask for help when things are tough to manage.
The people who care about you will never see it as an inconvenience or something bothersome. They will be happy to help. You won’t always be able to do it all on your own, and that’s ok.
Rely on your loved ones and let them assist you when you need it.
7. Pace yourself
Don’t push yourself too hard. It may be tempting to try and do every task that’s sitting on your to-do list, but if you overload yourself, it will only make things worse for you later. It might even cause you to end up in bed the following day.
Instead, pace yourself. Take on tasks little by little. Yes, it might take longer but you could really hurt yourself if you do too much. Ultimately, many things can wait. Make sure to always prioritize —that’s the key.
8. Give yourself permission for a pity party
It’s ok to allow yourself to have a pity party, cry, and feel down. It is important to let it out from time to time. It’s really hard to feel unwell all the time and watch the world pass you by (or at least, that’s how it can feel sometimes).
You don’t always have to have it all together and be a strong pilar all the time. It’s ok to be the one who needs to be taken care of, pampered, and treated with kindness.
Just make sure you don’t stay in that space for too long, as this can have grave consequences. This moment should be a pause —a chance to release everything you’ve been holding on to in order to keep it together at all times.
9. Find your way to cope
Whether it is through humor, positivity, or an objective perspective on the world around you, find your way to cope. Doing this is key. It’s what will allow you to keep pushing forward despite the struggles you might face every day.
For me, staying positive, using humor, and trying to see the best in everyone have helped me keep my spirits up, even on the bad days. Looking at life through this lens has made every day feel brighter rather than gloomy. My main coping mechanism is humor. I always say that sometimes it’s better to laugh rather than cry. So, I take everything with a pinch of humor.
Finding your way to cope is vital. It will help improve your mood and mental health. Copying mechanisms are essential for everyone, as they help us regulate our emotions and manage stressful situations. They give us control over our reactions, rather than allowing us to react impulsively and lose control.
10. Don’t shy away from new and fun experiences
For those suffering from a chronic illness, it can be very tempting to opt out of some activities because of the fear of feeling sick later. This is completely understandable, as an afternoon of fun can leave you feeling awful and needing to stay in bed for a couple of days.
Some days (and for some activities) you will have no choice but to skip certain experiences. You know your body best, and you need to be mindful of how far you should push yourself.
However, chances are that a bad day is right around the corner anyway, so why not have fun when you can?
More often than not, your body will be in pain, and you will be forced to take a step back, whether you want to or not. So, make the best of the good days.
And last but not least:
11. Always carry your medicine kit
Always carry with you the medicine that you are most likely to need at a moment’s notice. This will ensure that you are never unprepared when you start to feel ill.
Here’s how it looks for me: I always carry migraine and pain medicine in my bag. These are the ones I need the most on a daily basis. Wherever I go, they go. You have no idea how many times I’ve had to reach out for them while I’m out and about. That way, I can control the pain right away, helping me manage it or giving me time until I make my way home.
Being prepared will help you manage any discomfort or pain that might creep in while you’re away from home.
To wrap up
Having a chronic illness is the worst. It really is the rain on your parade. Especially because they usually do not come alone (as if they weren’t bad enough), they always bring more uninvited guests to the party, piling up different symptoms that create the worst illness medley.
It feels as if it takes us away from our children and makes our ability to care for them more difficult.
Nonetheless, although it is tough and challenging, it doesn’t mean you can’t be a great parent or present for your kids. It just means that we have to make some changes that will allow us to be there for them in a different way than we had originally planned.
Do not feel discouraged. You show great strength every day, and your kids love and appreciate you for who you are. Most of the time, we put the heaviest pressure on ourselves to excel at everything. But you need to know that you are already excelling and kicking butt as it is.
Psss… You might be interested in reading How To Practice Self-Care and Mindfulness as a Mom.
