By Suzan L. Jackson
Living with chronic illness is a huge challenge, but when you are a parent, there are additional burdens to bear. Parents are supposed to be the caretakers, always putting their children’s needs first. There is a lot of pressure in today’s world to be an involved parent – to go to every school function and sports game, to volunteer for your child’s organizations, to give amazing birthday parties, and more. Plus, most parents love their children unconditionally and want to give them the best of themselves. So, what happens when mom or dad is the one who needs to be taken care of?
Based on my own experiences and those of other sick parents, being a parent with chronic illness brings many difficult challenges, both emotional and practical. First and foremost are feelings of inadequacy, self-pity, and – the big one – GUILT. You may feel bad about all the things you can’t do with your kids, the plans you had for being an ideal parent before you got sick, your kids having to take care of you instead of the other way around, and even that your kids don’t know the real you, the person you were before you got sick. These feelings of guilt and inadequacy can eat away at you, adding to the physical pain and discomfort you already feel from your illness and even making you sicker.
From a practical point of view, there are the challenges of how to get everything done – around the house, taking care of the kids, and shuttling them to activities. Many of us still have old expectations from our lives before getting sick, of getting everything done, being a perfect parent, and juggling house, kids, work, and more. Not being able to do it all anymore can make us feel even more guilty and helpless. These kinds of negative feelings – piled onto the pain and exhaustion of your illness – can leave you feeling impatient and angry, perhaps even lashing out at your family, which can lead to even more guilt, in an endless cycle.
So, what can you do to break this cycle and be a better parent while sick? Parents in an online support group helped to come up with these coping tips:
Accept the new you and your life as it is today.
To your kids, you’re just Mom or Dad. They accept you as you are and love you. You need to accept yourself as you are now, too. This is your life for now. It’s not how much you can do that matters; it’s how much you love them.
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Spend time together.
Maybe you can no longer take them to a museum or water park. Focus on spending time together in a way that you can manage – enjoying a movie or TV show together, reading a book in bed, playing a quiet game – and treasure your time with them. Show them that you enjoy their company. It’s trite but so very true: their childhoods really do go by in a flash, so cherish each day.
Drop the guilt.
No more guilt or self-pity; you are enough, just the way you are. Instead of wallowing in feeling bad about what you can’t do, focus on your kids. What brings them joy and makes them happy? Instead of guilt when you can’t do something, cultivate a Buddhist principle called mudita, finding joy in the joy of others. Share in your family’s joy even when you can’t participate. Have them send you photos, text them while they are out, and experience their joy vicariously. When your child comes home from an outing all excited, give him or her your full attention and share in their enthusiasm, even if you can’t share in their activities.
Take care of yourself.
As parents, our natural inclination is to sacrifice our needs and put our kids first. But the more exhausted and sick you are, the harder it is to be the kind of parent you want to be. So, take care of yourself – physically & emotionally – so that you can be there for your kids when they need you.
Lower your expectations.
Part of accepting yourself as you are now is dropping those old expectations of the ideal parent. It’s OK to get cupcakes from the store for your child’s birthday, not to volunteer at school, and to let the house get messy. It’s even OK to limit your kids to just one activity at a time, as we did – they may be better for it, with downtime to be creative and relax. Focus on spending your limited time and energy with your kids. For events outside the house, concentrate on those that are most important to your child and plan to rest before and after. Let go of the others.
With your partner, family members and friends, decide how to maintain the house and yard. Don’t be afraid to ask for help – your loved ones want to help you but probably don’t know what you need. Don’t forget to get the kids involved in helping with the chores! Enlist parents of your kids’ friends to help with carpooling. When an event comes up that you can’t attend, invite grandparents or other family members or family friends. Hire help if you can afford it – consider this no longer a luxury but a necessity in your budget.
Looking back at my sons’ childhoods and the young adults they are today, I can tell you first-hand that there are some silver linings to being a parent with a chronic illness. Your kids will grow up with more empathy and compassion than most and will grow into caring adults. Having to help around the house makes them more responsible and independent. If you previously worked outside the home, you will be present more and have more time with your child than most parents do. This can result in closer relationships than most parents and children have, especially as they grow up. In a slower-paced life, your kids will grow up with a greater sense of peace and the ability to find joy in small moments every day. It’s not easy, but you can be a good parent in spite of your illness. Your children may actually be better for it in the long run.
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 15 years and also has Lyme disease. Both of her sons also got ME/CFS 13 years ago, but one is now fully recovered after 10 years of illness and the other is in college, still with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow her on Twitter at @livewithmecfs.