As a working mom, I was filled with guilt from the word go. I made the choice to continue working so that is on me. However, I didn’t make the choice to get sick and I am quite certain that my kiddo didn’t sign on for it either.
I believe that even the youngest kiddos can learn to do chores around the house. I think that teaching them responsibilities is a good thing. It’s part of being in a family. In our case, having an only child made it fairly easy.
My illness began when our daughter was 9. She has always been a caring, responsible child. When I was first sick and not yet diagnosed, I tried to hide my pain, although not very successfully. I tried not to rely on her unless absolutely necessary. She was never kept out of school or sports/activities because of my illnesses. I never missed her school activities or games. I was her Girl Scout leader and volleyball Mom.
As I got sicker, I had to ask for help. It began with simple things such as getting me an ice pack. As time went on and she got older, the requests became more often. Her chores stepped up. My husband says that they were all “normal” chores for a kid to do. I agree that emptying a dishwasher, kitty litter, and keeping her room clean are normal chores to expect a kid to do. I really didn’t think that a kid should have to “take” care of their parent. It just somehow happened that way. She started cooking her own meals when I couldn’t, doing her own laundry, etc.
There have been times that she has had to do things that normally I as the adult/parent should be doing. For example, she and I enjoy traveling. Traveling can be high stress, cause major fatigue and pain. When this occurs, my brain fog kicks into overdrive. My memory stick is on empty. She will be the one “in charge” of making sure we are going where we are supposed to be headed. Whether in an airport or driving, she is my GPS.
Fast forward 9 years. My daughter headed off to college this past September. Not only did I experience the conflict of happy/sad emotions that every parent feels when their kiddo is leaving home, I experienced fear as well.
I am not alone; I have my husband. However, his work schedule is such that I am often alone. I was afraid of how my life would be without her added help. There are days when I’m in too much pain to empty the dishwasher and put the dishes away in the high cupboards.
Honestly, the vacuuming, dishes and laundry do not get done right away, but they do get done. When she comes home for visits, she chips in just like she has always done.
After moving, she told me that it prepared her for dorm life. It made me wonder what other parents with chronic pain expect or rather need their kids to do. So, I did some research. The American Association of Caregiving Youth estimates there are over 1.4 million child caregivers between the age of 8 and 18 years old.
This caregiving has become so prevalent that they even coined the phrase “parentification” — a kind of role reversal in which children assume caregiving responsibilities before they’re developmentally ready.
These children, who are still in need of care themselves, find themselves accepting adult roles of caring for their loved ones.
I posed the question to other parents who live with chronic pain, “Have your children had to do more than expected chores around the house?” At first, the general consensus was no. I was told they wanted their children to be children.
I thought, what an awful person I must be. How could I have ruined my daughter’s childhood? The posts began to change; like myself, others who have children of driving age ask them to “pick things up at the store” or “pick up prescriptions.”
“He’s responsible for the grocery shopping and cooking. He cleans the house. He does all the laundry.”
“The simple act of letting the dog out helps save me spoons.”
“Having the kids curl up with me while I am having a bad day and watch movies makes me feel better.”
What about the kids that are the caregivers? How do kids feel about it?
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“It was ingrained in me from a very young age, what her meds were and how to help. I had no idea I was doing stuff that other kids weren’t. I didn’t think of myself as her caregiver. I loved her so much and I thought that it was important.” says Mike
“I didn’t know what a caregiver was; I felt like I was responsible for taking care of her.” Mary
My daughter, Ravyn, responded to the questions:
I had to grow up too fast. I lost my mother at age nine. No, not to death, but in my opinion something much worse. Chronic Illness. I’ve come to accept my reality, realizing I should appreciate what I have and not be frustrated with what I didn’t and don’t.
For a long time, I was resentful. Little things would get under my skin. It wasn’t the fact that she could no longer go on family hiking trips or shopping dates without ending up in pain for a week. It was that I had to become my own parent. I started making my own dinners, doing the household laundry, dishes, kitty litter, you name it. Never complaining because I knew how much not being a “normal” mom hurt her. Now these just seem like normal chores, but at the time I knew my responsibilities at home weren’t shared with my peers. In a lot of ways, I was bitter for having to mature so quickly.
In June of 2018, a health magazine interviewed me about my mom and her illness. The article focused on the family members of people living with chronic illness and how their lives were affected because of it.
The last question the interviewer asked me was “What is something you like about your mother’s illness?” As you can imagine, this question struck a nerve. I looked at her for a while before replying, “Something I like about my mom’s illness? Let me think. I love that my mom lives in constant pain. I love that she can’t sit on the ground without needing me to help her stand. I love that she feels guilty when my friends come over because the house can’t be kept to her idea of presentable. I love that I go to sleep at night knowing if I’m not there, she might not be able to get out of bed in the morning. You could say I love Fibromyalgia.”
The article came out the following month. I watched my mom as she read it. She began to break down in tears because she felt as though she had failed me as a mother. For the first time, a conversation opened up. We spent a long time talking that night, and the article allowed me to finally open up about my struggle with her illness. Never expressing myself had been emotionally exhausting and telling her about my frustrations brought us closer together.
Finally, I accepted my situation and was content with it. People often tell me I am a spitting image of my mother; I hope our similarities go deeper than the surface. Where most people would lay down and give up, my mom found her strength. After being diagnosed with Fibromyalgia along with 19 other conditions, she became an advocate, a published author, and a health coach – all of this while being a full-time teacher and mom.
If I have learned anything from my mom, it’s no matter how hard things get to persevere. Looking back now, I do wish I could have been a kid for a little while longer. I was exposed to some of the world’s harsh realities and learned my parents weren’t indestructible superheroes before my classmates learned that lesson. But from it, I gained a strength I don’t think I would otherwise have had.
My thoughts: Heartbroken and Proud
Despite everything, I think we also know that the more we let teenagers practice doing those things, the better they get at them. So, under certain circumstances, having extra responsibilities can be very positive for kids. Hopefully, the positives outweigh the negatives and they help teach our child caregivers to head out into the world knowing how to be responsible and what is the good thing to do.
We do need to offer support to those family members, especially children who have become caregivers. Ravyn and I continue our conversation and most importantly, we continue to learn from one another.
Melissa Swanson is a chronic pain patient, advocate, and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 20,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in “Living Well with Fibromyalgia” and the NFMCPA “Advocate Voice.” She also works with the International Support Fibromyalgia Network.
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