When my son Jacob was born I did not yet have my diagnosis of rheumatoid arthritis. When I was diagnosed with RA about two years later, a lot of what I couldn’t do when he was a baby started to make sense.
I was a young single mom. I was only just getting the hang of motherhood through the trial and error that most new parents go through and bam — now I had to learn how to live life as a single mother with an incurable lifelong chronic illness. Rheumatoid arthritis is progressive. For me, there’s more and more each year I can no longer handle doing.
Chronic illness does not only affect the person living with the disease but also their loved ones. For such a young person, my almost 7-year-old son has a much deeper understanding of chronic illness and arthritis than the average healthy adult does.
My Son Sees and Knows My Struggles
“Mommy, you used to cry a lot when I was younger,” says Jacob, who’s just entered grade 2. He was two years old when I was diagnosed with rheumatoid arthritis. I was 29. Before I could start to process and accept my RA diagnosis, along came a series of co-occurring physical and mental health problems: anxiety, depression, osteoarthritis, and fibromyalgia. The answers to my chronic pain hit me like a truck.
Nothing prepares you for this. But the love of my son is what fuels me. (That, and lots of coffee.)
There were signs my pain was in need of attention after his birth. I could barely strap him into the car seat or lift him; I struggled with buttons and clasps. I did not breastfeed because of my chronic pain issues. I hid in shame because I was not aware what was really going on with my body. I didn’t understand why it hurt to hold my baby and doubted anyone else would either. My chronic pain fed into my postpartum depression, which eventually turned into depression, a common comorbidity with rheumatoid arthritis.
My son knows Mommy gets sad or moody. He knows things aren’t easy for me.
He’s had firsthand experience being carted around with me, a single mother with rheumatoid arthritis, what life is like, he’s met every one of my doctors at some point. He’s had to sit with headphones on in my therapists’ office while I try to make sense of this all and appear stronger than I feel, for him. He’s learned to not be scared of going to the doctor. They help you when you are sick or hurt.
My Son Asks Me Hard Questions About *His* Health
When he gets sick or hurt, Jacob sometimes asks me if it will last forever like my disease. One of the first questions I asked my rheumatologist at the time of my diagnosis was about the chance of my son developing arthritis. I remember being relieved that because I was told that since he’s a boy, his risk is lower. He’s not going to have a biological sibling from me, even though he’s asked many times for a brother or sister. RA made me decide to not have another child. I struggle enough with one.
My Son Understands How RA Limits — and Blesses — Our Life
Jacob understands Mommy can’t work because she has arthritis. He knows that makes us poor and I can’t offer him what a working mom might be able to. But he knows that means spending time together is important. He knows Mommy can’t lift or carry him because of arthritis and as he gets bigger, he offers to carry things for me. Being helpful has become second nature to him.
I am grateful for the grandparents who take him when either of us gets too sick. Sometimes my fatigue or multiple doctor appointments get in the way of my being able to care for him. I have a compromised immune system that sometimes makes me scared of his germs. He knows Mommy needs her rest and that’s one reason why he spends weekends at his dad’s. Disease brings us closer but also pulls us apart.
My Son Sees My Imperfections
Sometimes I just can’t keep up or I keep forgetting important things. I am probably more permissive than what would be ideal. I might cut corners or not take the time to teach him things that I want him to know, like tying shoes or writing.
There are some days he understands and some days he struggles with how I have to cancel plans suddenly or is upset because I am just too tired to play. Children can be unpredictable, just like my chronic illness.
He’s allowed more screen time than I would like but when you are a single parent to a young child and battling fatigue, sometimes the screen can the only thing you need to get the rest your body is forcing you to do. When my son was a toddler I would prop him on my legs with the tablet with some games and I would sleep. I am an extremely light sleeper so I would wake if he moved or needed me but at the same time I felt such guilt because I couldn’t be active with him.
Dinners are often not spectacular. We might eat out or order in more often than I’d like because cooking can be a challenge with RA. I know the important thing is that he is fed and loved. He knows a lot about healthy foods because of how my disease has switched my viewpoint on food: I treat food as medicine that can help manage my RA. Together we make a lot of healthy choices and have fun with it.
He understands there are good drugs (medicine) and bad drugs. He understands that Mommy uses medicinal marijuana to treat her arthritis. He knows medicine is meant to help people and how important it is.
My Son Doesn’t Think My Disease Is ‘Invisible’
Sometimes other parents of his friends at school may not understand my lifestyle. They don’t understand I am disabled and might be quick to judge before they offer compassion or support.
But Jacob doesn’t view my disease as invisible and doesn’t understand when others do. He thinks they just don’t know I have arthritis; that’s why I don’t work, that’s why I am tired, that’s why I might appear lazy, that’s why I might have a faint cannabis smell. He knows some people are not so kind or understanding about disabilities. He knows the stigmas and misconceptions about arthritis are not true. He knows arthritis is serious.
He’s learned compassion and understanding for people with disabilities and who are in pain. He understands pain and disability better than his peers. He knows what volunteering with charities is like and the importance of coming together as a community to help those in need. He knows children can get arthritis too. He knows I am not the only one living like this. He’s used to seeing us on the television or in articles for arthritis advocacy.
One day when he can read those articles, including this one, he will know that my fight has been driven by my love for him.
- Tips for Parenting Young Children When You Have Arthritis
- How I Explain Rheumatoid Arthritis to People Who Have No Clue
- Doing Laundry with Chronic Illness: Tips to Make It Easier