Parenting with Chronic Pain


It has been nearly four years since my diagnoses and I have often been asked how it is I manage my role as a parent while I suffer with chronic pain. This is a question that I ask myself almost daily but I know I am not alone here. There are millions of young mothers trying to make sense of motherhood with chronic pain and while the chronic pain and parenting shouldn’t go together, they often do. I used to believe that we were a minority group but it turns out that there are millions of parents out there who live with the reality of chronic pain while they struggle to raise families and to maintain a balance between pain and parenting.

Parenting is hard but parenting when you live with chronic pain is especially difficult. Parenting means you draw attention away from yourself and give it to your children because they need you. That can be difficult when you deal with daily pain and fatigue. Nonetheless, it is important to note that you are not the only one suffering from the effects of your chronic pain condition. Children whose parents suffer from chronic pain have many questions and are often insecure about the future. The best thing a parent can do is be open with children about the effects of chronic pain and while this is difficult, it is a necessity to make your child feel at ease.

I am a mother to a three year old and a preteen. My three year old understands that mommy hurts and I find that on the days that I am most stressed with pain, he responds by acting out. For example, the other night, I had an ice pack under my neck because I was having excruciating pain in my neck and shoulders. My three year old was misbehaving and when he realized he was not getting a response from me, he looked at me with the saddest eyes, laid down next to me and wanted to be held. He wanted my attention when I couldn’t give it to him. I did not know how to respond but I knew he understood and one of the things I have learned is that I can’t hide my pain from my kids. I hugged my three year old, told him that mommy’s ouchie would go away soon and that I would play with him when the ouchie was gone.

My preteen has questions about the future and whether things will get worse for me. I tell him that I am doing everything I can so that I do not get worse. He worries about schedules and routines and often asks what he can do to help. He wants to know who will take care of his brother and him and wants to know that someone will. What I have learned from this experience is that my honesty holds more clout than my telling him that “I don’t know” or that “I will be better tomorrow” when he knows that may not be true.

I don’t know what my response will be when they get older and if my condition worsens. I just know that life for them isn’t easy or normal because I am not healthy. I also know that they understand empathy and a lot of their peers don’t and probably never will. I know that they know honesty and openness and they know how to be caring and sensitive. As they get older, they will learn to deal with life’s obstacles with lessons that we have learned as a family dealing with the effects of chronic pain on our lives. For now, however, all I can do offer them normalcy as often and as best as I can.

The best any chronically ill parent can do for their children is to share their good days and good moments with their children and to prepare them for when bad pain days arise. It is also important that parents stay on top of their children’s moods and behaviors because children are just as affected by the emotional effects of chronic pain as parents are. However, children show their emotional responses differently than adults do.

I have dealt with chronic pain for a number of years now and I know how challenging it makes parenting. I have learned the importance of being honest with my children and not making promises that I cannot keep. Additionally, I know that hiding my pain is not good for any of us. First, it gives my children the notion that everything is all right when it isn’t and second, hiding it makes me irritable and short-tempered. My kids need me to be a parent despite chronic pain and I do that to the best of my ability – with and in spite of chronic pain.

As parents, we need to be the responsible for our own health and for our children’s security at the same time. That means we have to continue to be parents despite chronic pain and we pay particular attention to how our children are affected. Sometimes, that means parenting through the pain to offer them a sense of normalcy and other times, it means leaving the channels of communication open between you and your children.

This post originally appeared in the Jan. 2, 2012 Creaky Joints Newsletter.

If you have not entered the Stopain giveaway, you can do so by clicking HERE.

About Lana

Since I started at Blogger, it took me two years to pull together an “about me” section which I have now moved here. When contemplating about writing an “about me” section on my blog that would talk about my diagnoses and the effect that they have had on my life. Every time I start to type, I am not sure what it is that I want to say. I just know that what I have to say has to have a profound effect on those reading the words and having all the same questions that I have had for some many years and even the questions that I still have. When I was enduring a variety tests and looking for answers, all I wanted was closure and that meant an answer for what was going on inside of me for so many years. At some point, I thought it was normal to feel sick everyday of your life because if it wasn’t normal, then it would mean that I wasn’t normal. After years of misdiagnosis, mistrust towards so many medical providers and frustration at the lack of answers, I started to wonder if what was wrong with me was all in my head. It took time but eventually the answers came. From the day that I received my first diagnosis, rheumatoid arthritis, I promised myself that RA would not win. A couple months later, I was also diagnosed with fibromyalgia. In beginning, I went through a variety of emotions: Fear, denial, optimism, frustration, numbness, and skepticism. My emotions would change several times day and hope and acceptance were a long ways down the road. In beginning, I thought that I would fight the inevitable but it didn’t take very long for the diseases to win. I became depressed even though I insisted to everyone in my life that I was not depressed and I kept going on because I had to. I leaned on my love and dedication to my children as my coping mechanism. I knew that no matter what I was going through I still had to be their mother. The years of trying to find answers taught me and gave me patience, dedication, strength and survival. I don’t know who I would be without that experience. So many times in my life before RA and FMS when life handed me lemons and I always threw them back. With RA an FMS, I can’t throw the lemons back because it doesn’t work that way. I just have to keep reminding myself that the lemonade will get sweeter with practice. Steroids, a lack of energy, and physical pain take a toll on you. I stopped stepping on the scale because I am tired of the weight gain. I stopped visiting friends and family who think that my conditions are simple and that I am just being a drama queen. I stopped trying to be perfect, having an impeccably clean home, and trying to be everything to everyone. What the illness does to us, we cannot control. How we respond, how we choose to fight back, and how we go on is our defense against the war waging inside of us. I am not saying it will ever be easy but it is what makes us exceptional. I can no longer carry my toddler and sometimes, it takes a lot out of me to make it into work every single day. There are nights where I lie awake staring at the ceiling whispering and repeating the words “I am in so much pain” until the sleep finally consumes me. I didn’t invite RA or FMS in my life. They just showed up one day and never left. I used to be a planner and my diseases ruined any plans that I will ever have. When I was pregnant with my now toddler, I scheduled the induction the day after I started my maternity leave because I wanted to spend as much time with my kids as I could before I went back to work. I refused a C-section when it looked like things weren’t progressing because it would ruin the “plan,” and now, I don’t make plans. I just live for the moment and if there is anything I hate more than the unexpected, it is disappointment and failure so I stopped planning. If I have to live side by side with my conditions, I have to understand that I cannot always win. Imagine being a dark room and trying to make your way around. Then, imagine that you find a light switch and the room becomes dim, not bright, but enough for you to navigate your way. For years, I was in the dark about what was happening to me, and then one day, the room became dimly lit. Of course, I wanted closure but instead I found that there were more questions than there were answers. I learned that I had to change my perceptions on what closure meant to me so that I could gain some normalcy back into my life now that I had some closure. One of the things that I do know is that I am not alone and that there were so many exceptional people who, like me, are looking for closure, answers and normalcy. I share my experiences because I want to live a “normal” life and I want others to see that it is okay to have a normal life and to keep dreaming, trying, believing and looking towards the future. I write about my life with RA and FMS, my diagnosis, and my quest to find answers and I continue to do so because when it gives others hope it gives me hope too. My blog is about who I am, my struggle for answers, and how I have made lemonade. I have found through my experience and the experiences of others dealing with the same conditions that living with arthritis and/or an autoimmune disease gets easier even though the disease gets harder. RA and FMS may control how I physically feel but they do not control who I am or how I choose to respond. It is never going to be easy and some days, the emotional part is worst than the physical but we all struggle with something and for me, it is RA and FMS. I am the patient advocate for two Alliance Health online communities, Arthritis Connect and Fibromyalgia Connect. It is something I am very proud of and I ask that you join me so that you can find answers and give support to others who have a multitude of questions.
This entry was posted in Chronic illnesses, Motherhood. Bookmark the permalink.

7 Responses to Parenting with Chronic Pain

  1. Pingback: Why share my struggles & triumphs online? « R.A. Warrior Mom

  2. I just came across your blog today. I left an entry on my blog just yesterday entitled, ‘Bearing Children’. Thank you for this entry. It is so hard living with a chronic illness and parenting children. Some days I just want to curl up in bed, but my daughters (4 and 1) are on the move and so must I be to be with them. I have recently moved to Hong Kong and have lost all my support networks. I’m so tired, but I will be sure to read your blog and gain support that way. Shan xo

    • Lana says:

      Thanks for coming by Shan. It definately is hard raising kids when you live with chronic pain. I think that the fact that they keep us is what keeps these conditions from winning.

  3. Terry says:

    It’s such a struggle to just make it day to day, I don’t know how you and other young parents living with a chronic disease do it. I played a large role in raising our daughter. She was 13 when I was diagnosed so I did not have the added responsibility of doing EVERYTHING for her like so many of you do. She is now 21 and just recently showed a paper she had written about my struggle with RA through her eyes. I hope that she will allow me to post it on my blog in the future. Kids understand more than you think they do.

    • Lana says:

      I think the fact that I know that they do know scares me the most. The same things I fear, they fear as well. I just figure my honesty keeps them from having to guess and hopefully prepares them if things get worse. I also know that they understand that things might get ready and that gives us all hope.

  4. Pingback: My Relationship with Pain | Living Life As I See Fit

  5. Pingback: The Emotional Numbness « Living Life As I See Fit

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Connecting to %s