Sitting in my bedroom with the lights off and door closed, I hear movement from one of my two children. “Please don’t come in. Please don’t come in.” I hate this thought of mine, but it’s real. It comes from the pain brought on by rheumatoid arthritis (RA) and/or the fatigue that RA just can’t ever seem to shake.
Then a second thought: “I am their mama; they need me.’” This thought hurts my heart almost as much as the pain from RA inflammation because I know I don’t have the energy to meet the needs of my children that day. As a parent with a chronic illness, I feel guilty as they continue past my door and I let out a sigh of relief.
Somedays I am not the mom my heart guides me to be. Being part of the chronic illness community, I know I am not alone in the feeling of guilt that comes when your health takes priority over everything else in life. But when your child, no matter the age, needs you and you can’t provide, it is hard to not feel guilty.
Tips for handling guilt:
Talk to your children
My children, now 20 and 22, don’t really know me without RA. I’ve learned over the years that they are amazingly perceptive and pick up on a lot. Talking to them in age-appropriate conversations about my illness has always made them and me feel a bit better. There is power in knowledge, even for our kids.
Don’t compare yourself to other parents
Whether you have a chronic illness or not, all parents want to perform their best. It is difficult not to compare ourselves to others even in the best-case scenario. But just as I know math is not my strength and not something my kids come to me for help with, I had to be honest about what I can and can’t do as a parent with a chronic illness.
Realize you are enough
I think what has helped me overcome guilt the most is something I learned even before my RA diagnosis. I will never be everything to my children. With my eldest’s first laugh, I understood that my husband was the fun parent. He can make them squeal in delight, plays hard outside, and has always been the go-to parent for enjoyment. Instead, I am the one my kids turn to when they need their heart mended or a quiet minute to regather themselves.
RA never changed my role as a mother. I have never been able to provide 100 percent of my children’s needs. I am glad they have others like my husband to fill those needs. No one person can ever do it alone.
Find your unique gifts as a parent and use them. Maybe you are the parent they can sit and watch movies with or snuggle up with for a good book. My son loved me watching him play video games. I learned so much about him by just listening — one of my greatest skills before and after RA.
I don’t believe parenting was ever intended to do alone. We need support, even in the best cases. But when also dealing with RA, we need to know there are other parents in our community who get some of our unique needs.
ChronicParents is a support group for parents living with any type of chronic illness. Chronic Parents has a private Facebook page and holds monthly Twitter chats.
Mamas Facing Forward is a support group for mamas of all chronic illnesses interested in discussing pregnancy, child birth, and children.
Please remember, guilt comes with parenting. If it wasn’t RA, it would be something else. Be gentle with yourselves. What our children want more than anything from us is to be loved. RA never prevents us from doing that.