The Emotion That Haunts Me as a Mama With a Chronic Illness

Of all the emotions associated with my chronic illness, guilt is the one that I struggle with the most. I spent most of my life being extremely independent, and I enjoyed being able to handle things on my own. I am a mother to three boys and have been a registered nurse for 19 years. If something needed to be done around the house, I took care of it. If the boys needed something or had somewhere to go, I took care of it. I earned a good income and I managed to juggle a full-time job, keeping up the house and bills, and being an involved mother with my boys. I now find myself unable to do most of the things I want, or need to do, and it is one of the most difficult aspects of my illness to accept.

I don’t think anyone can understand the frustration and anger that comes with losing your ability to do things you’ve always been able to do, until you have lived through it. Every day I have countless moments where I am overcome with guilt, as I watch others in my life be affected by my inability to do things because of my pain or fatigue. I watch my husband work 40 hours a week and then come home to manage a household. I watch him get up at 4 a.m., go to work for eight hours, come home and do laundry, cook meals, clean house, do the dishes, manage the bills, mow the yard and run the kids to their activities. I would give anything to be able to get up and clean house even for 30 minutes to help him. I feel so useless and so much like a burden to this man I adore. Of course he reassures me that he doesn’t mind, and that I need to rest but it does nothing to relieve the guilt I feel. I see other couples doing things together, vacations, family outings and I am reminded of how much my husband is missing out on because of my illness. We used to go hiking, we went on scenic drives to the lake, we would go out to eat at nice restaurants and occasionally go on short day trips just to get away and relax. My husband always enjoyed being outside and on the go, now he is always at home with me, unable to go do the things he enjoys.

I have always been proud of being a mom that was engaged and actively involved with my children. I was the mom that was down in the kitchen floor with them painting pictures, the mom that sat in their bedroom and built Lego cities, the mom that went outside on bug hunts, took them on trips to the park, took them geocaching, attended all their school events and sports events, let them have sleepovers, birthday parties and I loved every minute of it. Now I feel like I am a mom that is sitting on the sidelines watching my children grow up. I do my best to remain involved, but it’s so very hard. Guilt washes over me as I tell them that I am hurting and can’t take them to town, as I tell them that I am too tired to play that game right now, as I tell them they can’t have a friend over because I need to rest.

The financial impact of chronic illness also leads to feelings of guilt.  I am only able to work two days a week now and the amount of medical costs from doctor visits, radiology studies, medications, lab work and medical procedures is ridiculously high. I watch my husband sit at the computer stressed about how to get everything paid. I feel incredibly guilty that I can’t contribute more to our income and that I am creating this incredible burden on our lives. I want to be working full-time. I enjoy my job and making a difference in other people’s lives. I also know we planned our budget and life on my full-time income, and now we are drowning because I am unable to fulfill my part of the plan.

There’s so many emotions that go with a chronic illness, but I think that guilt is one that most healthcare providers, friends and family overlook. Guilt causes more depression over my illness and I feel like I probably handle it very poorly. I sometimes find myself getting angry and very short-tempered with those closest to me, and I realize after the fact that my guilt causes some of this. Guilt is a powerful emotion and I battle it every single day. I am trying to be more mindful of it and control it better, but I’m going to be honest, it’s not easy. All I can do is take each day one minute at a time. I constantly have to remind myself that I am doing the best I can, and that is all that can be expected of me. I remind myself that I am surrounded by people that love me no matter how much or how little I can do.