Photo: Courtesy of Tara Mandarano
“Mama, do you have pain today?”
I open my eyes to find my five-year-old daughter standing beside my bed, peering at my face for any signs of distress.
I know what she’s really asking: Am I able to play with her?
My husband and I take turns getting up with her on the weekend so that one of us can sleep in a little. It’s my shift this morning.
“Can you colour with me?” she asks. “I’m lonely.”
I slowly turn toward her, careful to hide my grimace as my joints protest. I’m in the middle of a flare-up, but I make an effort to smile and reassure her.
“Yes, just give me 10 minutes to brush my teeth and take my pills,” I say.
She stares back at me, a hint of frustration in her big blue eyes. She can tell that something is off by the way I respond. On a good day, I would just roll out of bed and follow her downstairs.
“You know how sometimes Mama needs to lie on the couch when we play because it’s more comfortable for me than sitting on the floor?”
She nods cautiously as I struggle to explain the complexities of chronic pain in kid-friendly terms.
“That’s because I have boo-boos and bruises on the inside of my body that nobody can see,” I tell her. “Some days they hurt a lot, and some days they don’t. Today, my knees are hurting because it’s raining outside.”
She nods again but looks away, impatient to get out the paper and pencil crayons.
“Colouring sounds fine, but I can’t really run around or make myself too tired or else I’ll have to take a break and rest. Do you understand?”
“Yes! I don’t want to play tag or kick the ball right now.”
Tears well up in my eyes. I realize that, by suggesting colouring and not something more physically taxing, she is aware of my limitations but still trying her best to engage me.
Once she has gone, I pop two pain pills and hope for the best. In 20 minutes, the meds will kick in and I’ll be able to draw rainbows and unicorns along with my daughter, just like any other mother.
But we both know I’m not the same as other moms. Every day is different when you’re a parent with chronic pain.
Mothers are often referred to as superheroes in our society. We’re meant to be the heart of the family—the one who nurtures, performs domestic duties and keeps everything running smoothly. But I lost my cape a long time ago. I no longer have any special powers in my daughter’s eyes.
When she was a toddler, I was still “supermom.” I had chronic pain, but it was more manageable back then and I could hide it better. I could play hide-and-seek. I could climb playground equipment. I could start spontaneous dance parties in our kitchen.
I was a fun mom.
Now that my daughter is older and more observant, she is not immune to or ignorant of my discomfort. For her, I’m either in pain and out of the picture or feeling well and able to go to the park. It’s a tough hand to be dealt as a mother, especially when I also manage various mental health issues.
My daughter may be able to pronounce the word “fibromyalgia,” but I don’t believe she really understands what it means. The same goes for “endometriosis.” All she knows is that sometimes I have bad pain days and spend more time with my hot water bottle than I do with her.
The sad and infuriating thing about chronic illness and pain is that it affects everybody in the family. In our house, it means that my husband has to take on a lot of day-to-day parenting, as well as cooking and cleaning. He also does most school drop-offs because it often takes me too long to get up and function in the morning. To be a single parent with a chronic illness? I can’t even imagine.
I’m beyond lucky to be married to a husband who does more than his fair share of parenting and chores, but it takes a heavy toll on him, too. Looking after me and my daughter leads to “compassion fatigue,” where a caretaker feels burned out and depleted. It also weighs heavily on our relationship.
Getting to the root of my discomfort feels like a full-time job. I don’t want to see my doctors more than my friends. I just want to feel normal. After two years of living in pain purgatory, the story I tell myself is that I deserve that. My family deserves that.
Lately, though, I’ve been lucky: I’ve been having more good days than bad days.
I was diagnosed with fibromyalgia 11 years ago, when I was 31 years old. A disorder characterized by widespread musculoskeletal pain, fibromyalgia often comes with fatigue, sleep problems, brain fog, memory loss and mood swings. At first, I coped well with over-the-counter drugs and sleeping pills, but five years later, everything changed.
I had a baby and, during my postpartum period, my pain became multiple times worse. The ongoing sleep deprivation that comes with a newborn was the main reason why the condition flared up. Everything hurt, and extra-strength Advil and Tylenol just weren’t cutting it. I felt like I was inhabiting the body of an 80-year-old woman. I was exhausted just pushing my daughter around the block in her stroller. My arms ached every time I washed my hair.
I lasted three weeks before my husband decided that he would take the night feeds with our baby daughter, giving me a solid six to eight hours of sleep to recover. Since he works from home, it was a good solution for us. I still felt guilty about moving our baby to her own room in her first month of life, but I knew that to be a good mother during the day, I had to do it.
Endometriosis is another chronic condition I live with that affects one in 10 women. It occurs when cells similar to those in the endometrium (the layer of tissue that usually covers the inside of the womb) grow outside of it, causing intense pelvic pain. I’ve been fortunate that my long history with the disease gave me a much-needed reprieve during my first few years of motherhood, but it came back with a vengeance last year and brought on cramps that often took my breath away.
On my worst days, I would go to the ER in desperation. Doctors would usually hook me up to morphine drips and give me a few weeks’ worth of prescriptions for opiates. Oxycodone was the only thing that actually dulled the pain and let me be a parent again, but I knew it wasn’t a long-term solution. I worried about my daughter every time I was dropped off at the hospital. Was she scared that one day I might not come back? I also struggled to do puzzles or arts and crafts with her when the opiates wore off. When the pain inevitably clawed its way back, I could only lie in bed and wait it out. I certainly wasn’t up for parenting.
Mothering on the sidelines made me feel like a part-time parent. It forced me take stock of my health and how I could advocate better for myself. I felt sad and excluded every time my daughter gravitated toward her dad when she wanted to create Lego houses or play table hockey. Spending half of my time in bed was depressing—I felt like my mental health was also in jeopardy and that I was missing out on my own life. On my doctor’s advice, I decided to have a hysterectomy to treat the endometriosis. I was only 40 and the decision wasn’t easy, but it meant a chance to start again—a way to get back into full-time parenting while permanently closing the door to the possibility of any more children.
For five glorious months, I was almost completely pain-free. I chased my girl around the house and heard her squeal in glee again after missing that sweet sound for so long. I carried her in my arms on request. I still had fibromyalgia, but I could deal with it. Unfortunately, my reprieve from pain didn’t last. That’s the thing about chronic pain: It usually comes back.
These days, I’m back to being another woman with undiagnosed pain. It’s a tough pill to swallow, especially after getting a taste of remission. Before my hysterectomy, I assured my daughter I would be “all better” when I came home. I desperately wanted to be the healthy mother she deserved. I felt like a failure when I couldn’t do physical activities with her.
But I’ve discovered that chronic illness doesn’t define me or make me a bad mother. I’ve learned to be more cautious with my promises now, but I still make every effort to be present and available for my daughter. I also set realistic expectations for myself and, if I’m in the middle of a flare-up or a bad pain day, I ask my husband or family for help.
Parenting with chronic pain sucks. It isn’t easy for anybody in my family, and there are many instances when I am simply not up for the task. On those days, I silently count down the hours until my daughter’s bedtime. When my energy is flickering near empty, I force myself to rest. Often, she doesn’t understand why I can’t play with her or read that last bedtime story. I don’t look sick, so she doesn’t get it.
It hurts me every time I have to remind her that my pain is invisible, but I’ve learned to be patient. Just because she can’t see it doesn’t mean that it isn’t there. Even though she is only a kid and it might sound irrational, I sometimes catch myself expecting her to fully understand and empathize with my limitations. But another lesson I’ve learned is that she is still too young to fully grasp the ups and downs of chronic illness and all its repercussions.
Parenting with chronic pain has actually made me a stronger mother. It’s forced me to dig deep for strength I didn’t know I had. It has also made me realize that my diagnoses aren’t everything I am. I’ve learned that there are ways to live with it without distancing my daughter or making her feel frightened.
When I’m not feeling well, I suggest activities that won’t wear me out. I play board games with her or we take turns reading to each other. Sometimes we just crawl into bed and eat popcorn while watching Peppa Pig.
I try my best to make school pickups and arrange play dates. Before bed, if I sense that she is getting angry or anxious about my health, I lie down with her in the dark and we talk. I reassure her that I’m not going anywhere, that I’m not going to die anytime soon and that I’ll always be there for her.
Living with chronic illness is also an opportunity to teach my daughter some valuable lessons. Being present and living in the moment are key. It makes our time together all the more precious. I can also show her the importance of self-care —that she needs to take care of herself, as well as others.
Now, I celebrate the good days more because I know how rare they can be. I love playing outside with my girl, blowing bubbles with her on the front lawn or cheering her on as she rides her bike down the street. I think she finally understands that even “supermoms” get pain sometimes, but it doesn’t mean they’ve quit.
In the middle of colouring, my daughter holds up her creation to show me the stick figures she has drawn of our little family.
I catch my breath and look at the paper more closely.
She has included me in the drawing this time, which doesn’t always happen. Sometimes it’s just her and her dad, which can sting. In this one, I have a mop of curly red hair and a lopsided grin. She has bangs and big eyelashes. We are holding hands.
She has also written a note for me. I translate the scrawled message with its missing letters. It reads “You are the best mom in this town and the universe.”
I close my eyes, smile and savour the moment. I’ve learned to appreciate these times alone with her, just the two of us, bonding and having fun despite my discomfort lingering in the background.
All is not lost. There are still good lessons to come out of this, for both of us. I’m a mom with chronic illness, but I’m doing my best. Parenting isn’t easy for me, but I still feel blessed.
Tara Mandarano is a Best of the Net–nominated writer and editor, and an advocate for patients in the mental health and chronic illness communities.
This article was originally published online in November 2019.