Parenting Amidst the Pain
I have had rheumatoid arthritis longer that I have been a mom. At times, motherhood has challenged me to the greatest degree possible. I’ve spent countless hours worried, stressed, and physically exhausted like never before – similar, yet not even comparable, to when I was first struggling with my newly diagnosed RA. You see, my daughter lives with chronic medical conditions too. We are comrades in a way because we both take medicine each day, have specified diets (luckily similar ones) and sometimes we encounter exacerbations and/or health emergencies.
It wasn’t until about a year ago (when she was four) that I had an exacerbation that ravaged my body with extreme fatigue and joint pain that limited my activity for a couple of weeks. It was so strange for me to not be in tiptop “mommy shape” and I knew she noticed the difference as she began acting out more, rather than retreating. She has a special way of telling me she is worried – it comes out in excessive energy. My daughter was trying to figure out what was wrong with me but could not find the words to ask. Finally one day, a straw literally almost broke the camel’s back. I was laying on the couch one afternoon and she leaped right onto my lower back while she yelled “giddyup horsie!” However, I let out a yelp like never before – in complete pain because my back was already hurting before she had jumped. I immediately saw a look in her eyes that I will never forget, she was so remorseful and scared. She was trying to figure out why this time hurt me so much when she had done it many times before with a playful reaction from me. After she apologized and we hugged for a minute, I knew exactly what I had to do.
It was time to explain my RA in terms my daughter could understand because the unknown was so scary. When I was trying to hold pain inside, I was also trying to put on a smiley/”everything is fine” face which was taking more of my energy than my actual physical pain was. Once I realized this had to be a learning opportunity, it became less about my RA and more about how honesty truly is the best policy. I basically explained it just as it is “I have something called rheumatoid arthritis (RA) and it makes my joints hurt and my body get really tired sometimes. I take medicine everyday to help. Some days I have to do extra things like take more medicine or rest more so I can do all the things I need to do for you and me. I also need your help, because we have to keep each other ‘s bodies safe. Part of that is not jumping on Mommy’s back when I’m laying on the couch. It hurts my bones too much. I will let you know when my body is ready to play horse/cowgirl again but maybe now we can play a game at the table instead? I also want you to know that I will still take care of you just as I did before my RA made my joints hurt and my body really tired.”
In our few minute talk I had explained the disease, what it means to me, how it relates to my role as Mom, and a bit of clarity for her worry. Our talk also provided a solution for her desire to want to play with me yet shaped it in a way that both of us could participate and enjoy together. Children need to know that their parent is available to them, not just physically but also emotionally. I gave her a brutally honest explanation but we are both better for it. In my experience, the unknown is the most difficult for children to handle. If they have words to go with the experience, then they can keep telling themselves about it instead of using their energy trying to figure it out. There is no blame, she did nothing to cause my pain (except for the super cowgirl jump onto her horse’s back, of course), but it was something besides her desire to play that caused her to do it. I was acting out of character and it was scary to her. Once I explained what was happening we had more relaxing times together during my exacerbation. A few months later I was sick with a bad cold virus. Low and behold, she related to it similarly. She noticed I was sick but this time, knew to find things for us to do anyway. She did not seem to be as worried about me either. Sickness comes and goes just as RA exacerbations do. I explained it like it comes in waves, like we see at the ocean and she understood from experience that that is exactly true. Through honest communication, as scary as it is for us adults, children are able to grasp their world a little easier and definitely more confidently.
Parenting while managing your own chronic health conditions is not an easy balance. My daughter and I have endured so many waves of exacerbations, medical emergencies, sickness, and frequent doctor visits. Perhaps through these experiences we are learning just what life is – an up and down cycle that never ends because we live in constant change. What better way live than as a real example of how to go through tough stuff while appreciating the moments we can. We cannot escape our circumstances (including medical diagnoses and/or emotional toll it takes), but we can be honest about what we are facing to ourselves and our families.