Parenting is arguably the world’s toughest job. From the moment they are born, children place incredible demands on our time, resources, and patience, often with very little obvious gratitude. But what does it mean to be a parent with chronic pain?
Many parents take for granted things like nursing, lifting a child into the air, and even walking down the street, but parents with chronic pain can struggle with those simple actions. Even getting out of bed in the morning to make breakfast and pack lunch before a child leaves for school may be impossible. Physical contact – as when a child comes barreling into your arms from across a playground or squeezes you as hard as they can in a moment of happiness – can produce heart-stopping, incapacitating pain.
As a parent, you want your children to know you love them. Not being able to hug them and lift them up can produce feelings of guilt and anger. If you have worked hard to accept your chronic pain and manage it, this new little person can suddenly change everything you thought you knew about your chronic pain. This guilt and anger can impact your relationship with the people around you – your partner, your family, and your friends. Even without chronic pain, becoming a parent forces you to re-evaluate yourself. With chronic pain, the impact of parenting feels even more profound and devastating.
Sarah Erdreich knows firsthand the struggle of parenting with chronic pain. She was born with damaged nerves in her face and head and developed new chronic pain conditions as she got older. Muscles spasms in her neck and shoulders and four surgeries in her wrist for misdiagnosed carpal tunnel syndrome have left her with daily pain from the waist up. When she and her husband decided to have a child, she was hopeful that she might be part of the one-third of women suffering from chronic pain who experienced relief from symptoms during pregnancy. While that was not the case, her pregnancy was mostly uneventful, and she is now mother to a happy, healthy, two-year-old daughter.
But Sarah cannot pick her daughter up. She cannot take her on long walks. Even basic childcare remains out of reach. In Sarah’s words:
“I can’t dress her by myself, or tie her shoes. I can’t make the appropriate hand motions to accompany “Itsy Bitsy Spider,” write out the alphabet, or brush her hair. But all that feels like mere window dressing for what I really can’t do: feel at all confident that I can take care of my child alone for more than an hour. On the few occasions that I’ve had to, the time passed in a blur that left me incapacitated and in tears.”
Imagine for a moment what it might feel like to not be able to do these simple tasks without pain, then consider the guilt that a parent feels for what may be potentially damaging to their child in the long run. There is conflicting research about the long-term effects on children raised by parents with chronic pain. One review of literature found that children of parents with chronic pain were more likely to complain of pain themselves and also suffered adjustment problems and behavioral issues as they got older.
But growing up with a parent in chronic pain doesn’t have to mean that children will suffer. There will be challenges for the family, but there is some research that indicates that parents with chronic pain can offer their children tremendous insight into what it means to be a compassionate, caring person. Children can learn to persevere through adversity and empathize when someone is suffering.
If you are a parent with chronic pain, there are some ways you can help your children understand while taking care of yourself.
Make your routine part of the household routine
If there are things that you know you need to do in order to make it through the day, make them the rule, not the exception. This goes back to the old airline safety speech: put your own mask on first.
Children, especially young children, need a routine, and if your self-care is integrated into that it may be easier for you. Instead of trying to force yourself into a child’s routine, help them fit into yours. If you do stretches and wake up slowly in the morning, find toys or books that might occupy your child. As they get older, have them stretch with you. As much as possible, turn it into a game, wiggling fingers and toes. And on the days when it hurts to blink, let your child complete your routine. Children love to perform and may jump at the chance to elaborate on your morning rituals.
Do the best you can, and recognize that “best” changes daily
Some days will be better than others. On those days, go to the park and have a picnic, or feed the ducks or play in the sand. On days that are not so rosy, make blanket forts and pile them high with books and snacks. Have a partner or a friend provision you with everything you need in easy reach if you will be on your own. Whatever day you are having, be kind to yourself and remember you are doing the best that you can with what you have on that day. One last important thing to remember: don’t say anything to yourself on bad days that you wouldn’t say to a friend.
Talk to your kids
How many details you share will depend on the age of the child, but it is important that your child understand that you want more than anything to be able to run, jump, play, and squeeze them close. When chronic pain is hidden and seen as something to be ashamed of, children may feel like they are the cause or that their parent doesn’t love them. Being open and honest and demonstrative in ways that you can when you are feeling well (try butterfly kisses with eyelashes or Eskimo kisses with noses) is a great way to build empathy and understanding in your children.
Remember: two-year-olds will be two-year-olds
Even with a parent who is 100% healthy, well-rested, and on top of their game, two-year-olds (and children of all ages, really) will still be difficult at times. They will lash out and say things that they don’t understand are hurtful (or, in the case of teenagers, sometimes they do). This can cause overwhelming guilt and feelings of inadequacy. As much as you can, remind yourself that truly, kids will be kids in this way, and the only thing you can control is your response.
Support for parents with chronic pain can be hard to find, but the author of the book Why Does Mommy Hurt? has started a Facebook page specifically geared to parents with chronic pain. Ask your doctor for local resources, or go online to find other chronic pain support groups. It is important to connect with people who are having your experience so that you know you are not alone. These groups can also offer advice and support for specific situations.
Your family needs you to show up. Maybe that means you are bedraggled, exhausted, and in pain, but, as much as you can, make the effort to be there. If being there means lying on the couch while family life swirls around you, that’s what it means. If it means attending every other game or recital instead of all of them, that’s what it means. Your family will see that you are there, that you are trying, and that you want to be with them. Your children will remember how hard you worked to be their parent, and they will love you more for it.
As Mother’s Day passes and Father’s Day approaches, we salute parents who are living with chronic pain and making it work. What is one thing that helps you parent through the pain?
Image by .jocelyn. via Flickr