Six years ago, I was diagnosed with myalgic encephalomyelitis, or chronic fatigue syndrome, a multi-system disease that severely inhibits metabolic features in the body. The disease eventually left me unable to speak or eat solid food for more than a year.
At some point, between the onset of my illness and when I became severely sick and bedridden, I realized I wanted to have a child. Almost simultaneously, I realized I couldn’t.
In January 2016, my sister gave birth to her son, Dominic. For the first time in my life, I saw up close what it was like to raise a child from infancy. And as daunting as it was to witness the “poopy” diapers and hear the incessant crying, I couldn’t help but feel that if only I were healthy, I would be up for the challenge.
But the disease, too, is an impetus for wanting a child. The loneliness and a lack of companionship that I have developed as a byproduct of the disease is definitely a factor. Having a little one to hold and nurture would undoubtedly lift my spirits and give me something meaningful to focus on instead of constantly stressing about my illness.
Having a chronic illness is a one-sided existence; it is all about one’s health and survival. A child would allow me to focus my energy on someone else for a change.
Having a child would also enable me to live, however vicariously, through my offspring. In a way, a child of my own would allow me to press “restart” and witness a life as though I were actually living it, free of illness — a life without the limitations of which currently hold me down.
My thoughts of parenthood continue to be stoked by exposure to my peers’ children. My caregiver, who is the same age as me, sometimes brings her daughters to work, which leaves me wishing I had a family of my own. Then there are myriad photos on social media of seemingly ever-expanding families. These friends of mine somehow manage to wrangle four small children and a small army of “fur children” all while keeping their sanity.
And although I still have my sanity, too (I think), I can’t even take care of myself, let alone another human. The care I demand — from my mother and paid caregivers — rivals that of even the neediest child.
I don’t have a partner, and even if I did, procreating would be extremely difficult and could potentially make my condition much worse.
The hallmark symptom of myalgic encephalomyelitis is exertion intolerance. In other words, I have a very limited amount of energy, and when I exceed my energy envelope, my body is not only useless, it becomes sicker. Extreme weakness plagues my muscles, neurological and cognitive problems make it difficult to tolerate lights and sounds, and an associated condition called postural orthostatic tachycardia syndrome (POTS) makes sitting up in bed arduous at best.
Even with enough money to pay for unlimited child care, along with an understanding and remarkably selfless partner, I would not meet the normal requirements of parenting.
I couldn’t read my child a bedtime story or change dirty diapers. I couldn’t push a stroller or sing a lullaby. I couldn’t, on my best day, handle the jarring sounds of a young child, no matter how much I loved him or her.
Then there is the possibility of my condition being hereditary. Because there has been so little research done on myalgic encephalomyelitis, it is uncertain whether there is a genetic component to the disease. (I know at least a handful of parents who share the disease with their offspring.)
The glimmer of hope is that I am relatively young, in my late 20s, and there may come a time when my health improves enough to start a family. If and when that time comes, however, I will surely wonder at what point my health will dip back down.
Two years ago, I was near death — severely malnourished and on IV hydration — a reminder that time and health are not guaranteed. While I may not be able to have a child now, I am optimistic that just as the universe conspired to make me sick, it will one day allow me to be a parent. And if it does, I’ll be ready.