Solo Moms Living with Chronic Illness
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Myalgic encephalomyelitis and parenting alone
Lately, I’ve had days of being so worn down and tired that whenever I sit on the couch, I start to doze off. Coffee doesn’t help, and I trudge through the act of caring for my two young girls for the weekend. At the end of the day, after the house is quiet and I’m able to do the final sweep of the living room and kitchen, picking up stray toys before collapsing into bed, I have a moment of thanks. I am thankful for my health and thankful I have the ability to do this often relentless task of working and providing for my family. I know that not every mom is so lucky.
“My daughter, Cady, worries about me and tries to help around the house more,” said Fern Mulholland in a recent interview. Mulholland was diagnosed with myalgic encephalomyelitis (ME), which is commonly known as chronic fatigue syndrome (CFS), in 2003. “I am actually not positive when I became ill with ME,” she said, but she is currently house- and bed-bound.
According to a 2015 report by the Institute of Medicine, ME/CFS is a disease that affects an estimated 836,000 to 2.5 million Americans. There is no treatment or cure, and many who suffer from it are left with debilitating pain, fatigue, and an inability to accomplish daily self-care tasks. Anyone can be predisposed to it, and patients often can pinpoint when it struck them, saying they got sick with a cold or flu from which they never recovered.
People who suffer through this nightmare are met with a stigma that counteracts their symptoms. When they go to the doctor, they often are referred to psychologists for depression and told to go out for a nice walk and take some antidepressants.
“Doctors treated her like she was crazy and did not give her proper care,” Sarah Humphreys said of her mom, who tried her hardest to raise three children on her own for several years. Humphreys’s family and doctors guess the illness started when her mom had a severe bacterial infection after her oldest child was born.
“She started changing then, losing energy,” Humphreys said. “I knew my mom was different from other moms because she didn’t cook a lot, didn’t clean much, forgot to pick me up from school many times, and she slept often.”
After Humphreys’s parents split up when she was in her teens, she had a hard time connecting with her mom because of the illness. “I didn’t really understand it, so I did my best not to come home.”
Mulholland feels fortunate that her relationship with her teenage daughter didn’t meet the same fate. “She is also disappointed that I am not able to do things with her like we used to,” she said. “I am very happy that having ME did not damage the close relationship Cady and I have. If anything, we have become closer.”
When I asked Mulholland if someone showed up on her doorstep with some kind of help, what would she want it to be, she said, “A nice, big hug.”
That speaks to patients who suffer from ME/CFS—they are an invisible population. Without any cure, treatment, and often even any validation from their doctors, they are left to suffer alone at home. But many Solo Moms are blessed with love and support from their children.
“My son’s the best, absolute best part of my life,” says Solo Mom Gina Giarrusso Bettor, who struggles with ME and was recently diagnosed with pancreatic cancer. “There have been times I have had to rob Peter to pay Paul, but [it was] worth [it]. I sold all my jewelry and valuables, yet the love’s so unconditional.”
Humphreys wishes she could do more for her mom, who currently lives with Humphreys’s younger sister and her family. “If I could, I would quit my job, win the lottery (to pay for the best doctors), and take care of her full time,” she said. “Spend time doing things that are fun and she enjoys, while also having her medical needs met. She can’t do much without being ‘wiped out,’ so her life is spent taking pills, eating, and going to doctor visits.”
I’ve sat and listened to the stories of countless patients who are house- or bed-bound from ME/CFS over the last few months, and I am always struck with their positivity and faith in getting better. I admire their strength, even though they might say they are very weak. But it is their innate strength that keeps them surviving—living one day at a time. I’m not sure I’d be able to do the same if I were in their situation. I suppose as a Solo Mom, you just do what needs to be done to survive. Hearing about the lives of people who have ME/CFS has given me a new perspective on my own life as a Solo Mom, knowing that even though I am at my most exhausted, it’s nothing compared to living with a chronic illness. I wake up and go to bed grateful for my health and my ability to accomplish most of what I set out to do that day: keeping the people who can’t be with me in my thoughts and heart.
Stephanie Land, has a bachelor’s degree in English and creative writing from the University of Montana. She and her two daughters live in Missoula, Montana. Read more of her story at stepville.com. You can follow her on Twitter at @stepville.
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