As you know, chronic diseases, like rheumatoid arthritis (RA) are progressive, meaning they will get worse over time. As a parent with a chronic disease, do you wonder if it prevents you from being the kind of parent you want to be?
From experience, I can tell you that raising kids while struggling with RA is no cakewalk. Pain, fatigue and stiffness are still my daily realities and they make parenting a challenge.
As you know, being a parent means you draw attention away from yourself and you give it to your children because they need you. That can be especially difficult when you are dealing with chronic pain, disease symptoms and fatigue. Further, you are not the only one who suffers from the effects of your disease. Children whose parents living with a chronic illness and/or chronic pain condition have many questions about the effects of chronic and while this can be difficult, it is important for parents to ease their children’s fears about chronic illness and pain.
I am mother to a four year old and a teen. My four year old understands that mommy hurts and I find that on the days I am dealing with high levels of pain, he responds by acting act. My thirteen year old has questions about the future and whether things will get worse for me. I respond by telling them that I will be do everything I can so that I don’t get worse. He worries about schedules and routines and often asks how he can help. He wants to know who will care for his brother and him and he wants to know that someone will. What I have learned is that my honesty holds me credibility than telling him that “I don’t know” or that “I will be better tomorrow” when that may not be true.
I know that as my kids get older and my RA worsens their questions will change and I don’t know what my responses will be. I just know that life for us isn’t normal or easy because I am not healthy. What I do know is that my children understand empathy a lot more than their peers do. I also know that as they get older they will learn to deal with life’s obstacles with the lessons we have learned as a family dealing with effects of RA on our lives. For now, I try to offer than normalcy as often and as best as I can.
The best any parent living with chronic illness can offer to their children is to share their good days and good moments and prepare them for when bad days arise. It is also important to stay on top of your children’s moods and behaviors because they are just as affected as you are emotionally. However, their responses will be different than ours.
So, parenting with chronic illness can be hard but the good news is that new medicines for treating autoimmune diseases can halt joint destruction and reduce the chances of disability significantly. Moreover, early and aggressive treatment can improve the quality of life for parents with chronic disease and hopefully help them to avoid disability.