Tips for Parents

Parenting With A Chronic Illness

It’s hard parenting with a chronic illness. Watching my two beautiful girls and knowing that I cannot give them all the time and attention that I would like to.
 
Having a chronic illness means that my abilities are limited. Sometimes in the morning, I can barely wake up. I struggle to change them and feed them. Then I just lie on the floor, making sure they don’t hurt themselves, and wait, pray, beg for nap time.

What Is A Chronic Illness?

I don’t know if you know what a chronic illness is. It is a medical condition that lasts a lifetime. The University of Michigan’s Center for Managing Chronic Disease calls chronic illnesses “long-lasting conditions that usually can be controlled but not cured.” That means it is here to stay.
 
That also means that there will be bad days and good days. The good days can make me feel like life is so great and for a short period I forget that I even have an illness. I will plan and dream of all the things I’ll be able to do. That feeling usually goes away as soon as a symptom reminds me that I am limited.

What Does it Mean Being A Parent With A Chronic Illness?

What does that mean when you are a parent, of twins at that? It means that I need a lot of help. It means chores won’t ever be done in one day. Dinner is frozen most of the time.

It means the kids will understand things differently than other kids and will probably take on responsibility earlier than most.

Get A Support System

I always stress the importance of having a support system as a parent of twins. It is even more important as a parent with a chronic illness.
Your support system needs to be able to be there when you need them. It may mean they help out with chores, take care of the babies, bring dinner, or take over so that you can rest.
 
Your support system and significant other need to understand that the chores will only be done minimally. That might mean bottles are washed and the pamper pail was emptied but nothing else is done.
 
They need to understand that the energy to cook after a long day of working and/or taking care of the kids is most likely non-existent. Dinner might be takeout, leftovers, or something from the freezer

Taking Care of Kids Is Hard

Parenting with a chronic illness means your babysitting days are long gone. I barely have the time and energy to take care of my own kids.
It also means rethinking having more kids. The infant days are the hardest. Those days require 24 hour attention.
 
It’s like being on call, and that can feel excruciating when you’re dealing with symptoms. It can also be a trigger for symptoms. This is a sad thought for someone who was hoping for another set of twins, boys this time.

Staying Flexible

Parenting with a chronic illness means giving up the idea of how life should go. Life needs to be real flexible. It doesn’t mean that you can’t make plans, it just means you need to plan for your illness.
 
For instance, If we plan to go to an amusement park for the day, I need to be in tune with my body and aware of my triggers. Then plan on what to do next if I start losing energy. I also need to know that the people I go with are understanding if they need to go on without me for a while or if I need to call it a day.

More Responsibilty For The Kids

Parenting with a chronic illness means that the kids will probably start learning responsibility earlier than most. You will be needing and requesting them to help out in whatever way is within their capabilities.
That might mean just being able to take care of themselves and eating simple meals. It could also mean helping with tasks that have to be done.
 
It means teaching them to understand that you are limited on your abilities some days and how that might affect their lives.
You might miss soccer games or dance recitals. You might not be able to make cupcakes for the bake sale or go to that parent meeting.

Taking Care Of Your Needs

Being a parent, it is easy to lose track of yourself while taking care of the kids. You have to feed them and change them, bathe them and play with them, teach them and spend time with them, and nap with them. It is like every second of your day is planned and none of it has to do with yourself.
 
It is important for all parents to make time in their day to take care of themselves, especially those with a chronic illness.
For me that means, slowing down in the morning while we are walking out the door. The girls will be screaming because they know it is time to go but I need to take a minute to make sure I packed everything to take care of myself for the day: breakfast, water, lunch, protein shake, vitamins, and medicine. If I forget something then I lose my balance and I am not a full capacity for them.
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What Now?

Now I give you some helpful tips to maximize your time and energy and to live in spite of your illness.

  1. Get A Support SystemI know I say this in almost every post but it is that important. You will need people who are on your side, who understand, and who can help in your time of need. It might be just to talk, or it could be to babysit, or help with chores.
  2. Know Your LimitsKnow what your triggers are and when you might be pushing yourself too far. Knowing this can prevent you from losing all your energy, crashing, or relapsing.
  3. Be Flexible-You may not be able to make promises and plans like you used to but that doesn’t mean that you can’t make any at all. Make sure you leave room in there for flexibility. Take your kids pumpkin picking but make sure you don’t walk too much or that you stop for rests if exertion is a trigger.
  4. Focus On What You Can DoThe easiest way to start a pity party is focusing on all that your missing out on. You don’t want that, it’s depressing. Focus on ALL the things you can do. The summer sun may trigger your MS symptoms but a fun game night in the air conditioner is fun. So is a cookout in the evening when it gets a little cooler. I used to love night swimming with my cousins when we were younger.
  5. Take Care Of Your NeedsKids are dependent upon you, especially smaller ones, we know this. That doesn’t mean you are non-existent though. When you gave birth you took on a new title but you didn’t get rid of all the other ones. Before you were a parent you may have liked to window-shop at the mall, sew some fun things you may never be able to use, or Netflix and chill with a rom-com. You should still do those things. You get to fulfill yourself which makes you feel good and your kids see the importance of taking care of oneself. When you feel good, it makes it so much easier to be joyful around the kids.

Please let us know if you have any other tips you want to share with other parents. Or tell me your story and how you do it, especially if you have twins!

 

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12 thoughts on “Parenting With A Chronic Illness

  1. Hello! This post has really been helpful. I know parenting is really difficult. But with a chronicle illness it’s waaay harder.

    But things you have mentioned here, based on your own experience, are greatly encouraging. To stay flexible when planning out the day is a huge game changer that will remove a lot of stress.

    And your advice of never losing track of our own needs as a parent is also so important.

    Thank you so much!

    1. Thanks Henry. I believe self care is important, even as a parent. If you show your children that you care for yourself just as much as them then they will learn to love themselves as well as others.

  2. I am sorry to hear about your illness. I only suffer from a chronic back pain from a car accidents. Like you mentioned, there are good days and bad days. It is like a miracle when it is a good day. It gets worse when it is winter, thank god I do not have kids yet. However, I do have a friend who has a neurological disorder and she is taking care of her 2 kids. I will share this post with her. Thank you so much for coming up with this useful list. God bless.

    1. Chronic Pain can definitely fall into this category. It is not something you do not want to make worse. I love good days. They feel like nothing has ever been wrong. It’s good that you know that cold weather is a trigger for your pain. I guess that would mean your activities are limited during the winter. I hate cold weather anyway. I hope you live somewhere warm. If not, maybe you should consider it to give yourself more good days or at least avoid a whole season of triggers. 

  3. Parenting with a chronic illness is really something that needs to be tackled with immediate effect, basically i will say for parent who has this illness to take a stand against it by making themselves happy first of all then can they overcome this illness because depression cannot kick in and be sure things will go fine.

    1. It’s hard not to get depressed when thinking of all the things you have lost or all the ways you are limited, but it is definitely something that needs to be addressed because depression is not something that you would want to encompass you. 

  4. Hey there, 

    I am not yet a father or a significant other to a mother with a chronic disease. Although my mother suffers from a chronic illness and I appreciated your perspective from this article very much. It also inspired me to ask, what are more ways I could help be supportive to my mother when she is dealing with symptoms?

    Thank you so much,

    Aaron

    1. It’s nice, Aaron, that you are willing to support and help. The best way to find out how she can be supported during symptoms is to ask her. Every person’s needs are different. But a few tips are to be understanding and then look around. The things she would usually take care of you can take care of for her. Let her know that it’s ok that she can’t take care of it in the moment and then give her what she needs to take care of herself.

  5. I have to say that raising and taking care of children is hard enough when you’re healthy.And taking care of twins on top of it?

    I have to agree that being flexible is putting it mildly. The kids really must pick up on things earlier than they normally would and hopefully the other parent can help pick up the slack.

    It’s important to take care of yourself first but I know that’s easier said than done.It’s like a balancing act and you can’t drop any balls.

    Meetings where you can have a support system are equally crucial to making it work.You can only do your best and know when your body says no more. Limitation comes into play and that’s when you have to try and turn it over to someone else.

    I would say this is one very tough situation to deal with, wouldn’t you?

    1. Self care is important for so many reasons and it really makes a difference when dealing with a chronic illness. It is indeed a tough situation to be in and I truly hope that all that have to cross the bridge do not have to do it alone nor attempt to do it alone. 

  6. This is really educative and informative. This is a must read for every parent. My aunt has been suffering from chronic illness for the past three months and I have been the one that has been taking care of the children although sometimes she take it upon herself to do her daily chores . I will share this post to her so she can learn how to go about it parenting her children despite her illness.

    1. Thanks Lok. It can be really tough taking care of children when dealing with a chronic illness. I know that you are a big help in her every day care and bring her some peace of mind. 

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