What Parenting With Chronic Pain is Like

By Lana Barhum, Columnist

I am a parent with chronic pain.

The reality of those words strikes a nerve. Living with rheumatoid arthritis (RA) and fibromyalgia can often be debilitating and draining.  The pain makes it hard to stand for long periods of time, be active, and spend quality time with my children. Sometimes, something as simple as cooking dinner takes everything I’ve got. 

It has been a long week, and at the moment I am struggling with low energy levels and pain so bad that I can barely stand. Dinner was delivered, as it seems to be most nights lately.  And I’m frustrated because there is overwhelming research that is not in favor of parents like me.

Most studies about parents with chronic pain suggest their children are adversely affected, including one published in the Journal of Child and Adolescent Psychiatric Nursing. That study was painful to read, because it found that children whose parents live with chronic pain are more likely to have adjustment and behavioral problems.

They’re also more likely to have pain complaints of their own. A 2013 study in JAMA Pediatrics looked at 8,200 teens and found that those who had parents with chronic pain were at a greater risk of having chronic pain themselves.

The researchers do not know, however, if it is caused by genetics, learned behavior, sympathy or other factors. Whatever the reason, these children experience actual physical pain.

Another study, this one from the Journal of Nursing Scholarship, finds adolescents who grow up with parents who struggle with pain generally see their parents as physically and emotionally uninvolved, and more likely to be angry, irritable and unpredictable. As a result, the children hid their true feelings or needs from their parents for fear of stressing them or causing them more pain. Some blamed themselves for their parents’ suffering. Others turned to substance abuse.

Studies like these break my heart.  It is not my kids’ fault that I hurt. And they shouldn’t have to miss out on life because I am in too much pain to handle the simplest activities. It scares me that they may not speak up or have their needs met because of my struggles with pain.

Chronic pain also affects how I parent. The research in this area disappoints me, mostly because I think it is true for me. A 2006 study in the Journal of Pain compared mothers with chronic pain to mothers without pain. The mothers living with pain reported they were more lax in their parenting and had a reduced relationship quality with their children.

Our pain also effects are children emotionally, whether they speak up about it or not. A 2012 study published in the journal Pain found that teenagers, especially girls, whose parents were in pain were more likely to experience anxiety and depression.  Teenage girls were also at a greater risk for behavior problems in school if their mothers were pain.

Doing the Best I Can

Chronic pain is a torture I don’t deserve and there are days where I feel sorry for myself.  I was 32 when I was diagnosed and here I am, nine years later, with a purse full of pills. It hasn’t gotten better and I only see it getting worse.  My marriage ended because this was too much for my ex-husband. None of this is fair to my kids who have lost the most from my battle with RA and fibromyalgia pain.

Most days, I talk myself into sucking it up.  I look in the mirror tell myself while it was my choice to have children, it wasn’t their choice to have a mother who lives with pain.  So, I am taking my kids out for quality family time even if I have to limp around and pay for it later.  I will be the mother they deserve, even if it is for one day.

I know I shouldn’t compare myself to other parents because I am in no way like them, but I do. There are days where I can actually be Supermom. On a good day, I work my 9 to 5 job, come home, make a home-cooked meal, help with homework and even clean up my modest home before I go to bed. But when my head hits the pillow, my body has had it.  I know other parents can do this stuff every day without pain and extreme fatigue, and while that upsets me, I still choose to feel a sense of accomplishment. 

The studies about parents with chronic pain don’t seem to be in my favor, but I did find one that gave me hope.  A 2008 study published in the journal Qualitative Health Research found that when a mother has chronic pain her children actually develop life skills early on and are more successful in adverse situations. That was just what I needed to hear.

After all, I see my kids turning out just fine. Despite all of my worst fears, my boys – ages 8 and 17 – are turning out to be kind, caring, smart and responsible human beings, and I couldn’t be prouder.  I am also grateful they see me as a mother who, despite chronic pain, can still love them, be there for them, and who shows them daily that anything is possible even in the most adverse situations.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain and Parenting

By Barby Ingle, Columnist

A little over a year ago my brother and I published a book for children who have people in their life living with chronic pain. We both live in pain and he has children.

In preparing the book we did a lot of research on the language that children understand. For instance, using the word “hurt” instead of “pain” for children under six years of age helps them better comprehend chronic pain. Saying “Aunt Barby hurts” works better than “Aunt Barby has a migraine.”

When speaking with your child about chronic pain, try to create an open dialog that is age appropriate. Children need to be reassured about what is happening, especially when the child is the patient. For school-aged children, keep their teachers and counselors involved and offer them additional counseling and resources.

Young children have very active imaginations and when left to their own thoughts can make a situation much worse. I remember a time when I was young and a friend in school passed away. I had a cold the week before and went to school anyway. The teacher explained to the class that Chris had passed away after getting sick. For years afterward I thought I made him sick and that is why he died.

School-aged children think in black and white terms, so give realistic and honest answers like: “I don’t know when Christy will get better, but we can help make it easier for her if we do this.” 

Dealing with an adolescent child is a roller coaster for many parents and chronic pain makes that roller coaster ride even scarier. Many patients who are diagnosed in their teenage or early adult years will stop or slow development mentally and emotionally unless they are guided in managing their pain properly. They need understanding, support and encouragement from others, and to be engaged in social activities as much as possible.

It is best to answer their questions honestly and treat them with the ability to understand.  Get them professional help if they are acting out or asking questions you feel will be better answered by someone qualified in chronic pain and psychology.  

A big part of parenting and interacting with younger people with pain is our own guilt about their limitations. Instead of beating ourselves up, read them a bedtime story, watch a movie, or just spend time together. You may be surprised how proud your child is of how you are handling such a difficult situation as their caregiver. 

For parents in pain, the birth of a child is a wonderful and joyful event, but it raises a whole new set of concerns. For those who develop a pain condition after their child is used to life with fewer limitations and restrictions, this can bring on even more challenges and adjustments.

Some important questions to ask yourself are what if the pain grows worse? How will my child understand? How can I still parent them appropriately? And is there a difference if it’s mom or dad in pain? 

Have an open dialogue and communication that helps your children, grandchildren, nephews and nieces understand limitations and why a family member or parent is different. Children need to know they cannot catch your pain!

Children function better with a routine and knowing how things will get done – as in how they get to school or who will make their lunch. Make plans and stay organized. Get the family involved so that they know it will all be okay if mom or dad can’t manage things that day. Children of all ages need to be reassured about what is happening and that it will all work itself out. By planning, preparing, and helping, you can make it go that much smoother for the whole family.  

The bigger part of parenting with pain is our own guilt that we are short changing them somehow because of our limitations. With my older nephews, I didn’t have as close of a relationship with them for years due to not being able to manage expectations. Once I was able to set the expectation, it helped tremendously.

Yes, we may have to do things differently and maybe a few less things, but pick what matters and make it count.

And check out "Aunt Barby’s Invisible, Endless Owie" by Tim Ingle and Barby Ingle.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.