As parents, we are all too familiar with how tough raising a family can be. Add on top of that, chronic illness and we are in a whole other ball game.
Speaking from personal experience of someone who suffers from several chronic illnesses, I find it hard at times taking care of my son and even harder to take care of myself. Thanks to a wonderful husband who knows when I’m struggling, stepping up to the plate to become the MVP of our 3 man team. He takes over and becomes mine and our son’s main caregiver, as well as working full time.
He is my hero.
I wanted to share some of the tips that we’ve learned over the years that help us cope as a family with chronic illness. Each illness and home situation is different, and not all the tips will be helpful for everyone but I hope that they can give some pointers on how to support a loved one with a chronic illness.
Get To Know About Their Illness/Condition
Many chronic illnesseshave a long list of symptoms. Take some time to ask your partner questions about their condition. Do some research online and go with your partner to appointments. If there is something that you don’t understand – ask about it. Become as knowledgeable as they are about the condition as this will help you both out in the long term.
Knowing about the condition will help you empathize with your partner & anyone else you may know who has that particular illness. You will be able to read any warning signs of a flare-up or relapse in their body language. Which in theory will help you minimize the severity of flare.
Speaking from experience of someone who has tried and failed to hide flares in the past. My husband has read the signs, which has meant he was able to reduce the amount of time I’ve been on bed rest.
Let Them Rest
Whenever I’ve spoken to anyone who has a chronic illness, rest is one of the most important parts of them getting back on their feet. Let your partner put their feet up whenever possible. If they are stubborn and will not go, insist! At first they might not be happy doing that, but in the long run I can guarantee they will thank you for it.
Spend some quality time with the kids. Get them out of the house, this will let your partner rest without the temptation of checking in on you and the kids.
Take charge and do some of the chores that need doing in the house. Doing this will let you partner use all their energy spending time with the kids, and not doing dishes.
Reassure Them Their Illness Doesn’t Make Them A Bad Parent
Guilt is one of the feelings that come hand in hand with parenting. That guilt can range from leaving the kids to work or disciplining them the right way.A parent who has a chronic illness has those feelings of guilt along with additional thoughts of being a bad parent. They might feel like a terrible parent for not being able to take the kids to their favourite places. They might be so low in energy that they cant play with their child and therefore let the digital nanny take some of the slack. All of these things can add extra guilt.
Being told that you are not a bad parent because of your illness helps. There have been times when I’ve been overwhelmed with feelings of guilt, that I questioned whether I should be a parent. My partner sat me down and told me all the good things about our son and my parenting, It made a world of difference to me. So your child might be using a tablet more than you’d ideally like, or your home may be messy, but if they are happy and healthy then you and your partner are doing a great job.
When planning family activities a good tip is to think ahead and make sure that the activity is something that the whole family can take part in. If the activity is an outdoor one, make sure you’ve packed snacks, clothes and drinks, not only for the kids but for your partner as well. Remember that if they are low in energy or in a lot of pain, they might not be able to take part.
As well as planning ahead, be ready for potential plans not happening. Your partner might be fine one day, but that doesn’t mean that they will feel the same the next day. Have back up activities that you can do at home as a family, for example, board games, movie days or get the kids to put on a show. If your partner is having a bad day, take the kids out on your own and let them rest. Take lots of pictures so they don’t feel like they are missing out.
These are just a few tips and tricks we have learnt along the way. I hope you find them useful.
Hello, I’m Nicola, I write over at nicolajogston.com. Where I share my life as a disabled parent, who also suffers from several chronic illnesses. I am a mummy to our son Alex who is 2 going on 12. Married to my soul mate and best friend.