My name is Lana and I was diagnosed with rheumatoid arthritis and fibromyalgia at age 32. Additionally, a rear end auto collision in May left me with neck and back injuries that I am yet to recover from.
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.