I'm a 40-year-old stay-at-home kid — and it isn't so bad

Thanks to my disease, I'll probably live with my mom forever. I'm okay with that.

A woman and a house.
(Image credit: Illustrated | Sylverarts/iStock, Katsiaryna Pleshakova/iStock)

At the start of the second semester of my sophomore year of college, I threw some clothes, books, and a packet of chocolate-chip cookies in a backpack, locked my room on campus, and took the train home, where I moved in with my mom.

Over the previous six months, I'd struggled with extreme exhaustion after performing the most routine actions: sitting through a lecture, cooking a meal, getting out of bed. Every night as I tried to study, my legs and back spasmed in pain. I would try to read the same paragraph over and over, taking in nothing as my eyelids drifted closed. I thought that if I took a couple of weeks off, I might regain my strength. That was 20 years ago. I'm still here.

My doctor diagnosed me with ME/CFS, or chronic fatigue syndrome, a neurological illness that causes fatigue, pain and cognitive dysfunction, among other debilitating symptoms. He explained that it was probably connected to the mono I had when I was 18 — in some people, the virus can be reactivated in times of stress (or in times of drinking too much and sleeping too little, in my case) making them more ill than they were the first time. There are few effective treatments and no known cures, which meant that while my friends all moved on, moved out, bought homes, and had children of their own, I settled into life as a stay-at-home-kid.

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At first, it wasn't embarrassing. I'm a couple of years too old to be a millennial, but I consider myself an honorary member of what's been labeled the "boomerang generation." In the U.K., where I'm from, one in four people aged 20-34 live with one or both parents. In the U.S., 15 percent of 25- to 35-year-olds do, a five percent increase on Gen-Xers.

It's not weird for someone in their early 20s to still be living at home, and in your early 30s, it seems like less of an indictment of your coping skills than of the vagaries of the housing market. As that decade draws to a close, though, you can't help but cringe when a new acquaintance asks about your living situation and the answer is "with my mom," knowing they'll probably write you off as a loser or a weirdo. In my 40s, I'm tempted to spin it as "my mom lives with me," which suggests I'm a good daughter, rather than a leech. And let's be clear: I am a leech.

I don't mean to be, but living with a disabling illness means I have less energy than my 69-year-old mother. I cook and clean up after myself, but she does the laundry, changes my bed, and vacuums the floors. I give her money for rent, but it's a fraction of what I'd pay anywhere else, and I can't afford to move. She also supports me in ways few landlords would agree to: She's driven me to therapy, visited me in hospital, and (on a doctor's recommendation) sunk a needle full of magnesium into my thigh.

Despite our efforts, my health has barely improved, but I have learned to adapt, going from living on disability benefits to writing part-time from home, in my pajamas. I'm grateful for the work but don't earn enough to support myself. My mom's ambitions took a hit, too. At the age of 48, she'd just started college for the first time when I dropped out. Instead of finally being free, she found herself taking care of a needy child again. When I first came home I was so devastated and incapable that she made me a sandwich for lunch every morning and held my hand until I fell asleep at night. I didn't register that she didn't have to do this, or that the pressure must have been overwhelming, even when she had to drop courses and delay her graduation by a couple of years.

The London School of Economics analyzed the effects of adult children returning home and concluded that we cause "a significant decline in parents' quality of life and well-being." I feel guilty that my mom hasn't been able to relish the last 20 years and that she can't have the retirement she always wanted. It's an especially cruel twist of fate considering how hard she worked to bring me up on her own after my parents divorced when I was nine. In fact, my life is so similar to how it was when I was a child (stuck in the suburbs, unable to drive) that I sometimes forget ride-sharing apps exist and that my mom isn't the boss of me.

We've clashed about everything from temperature control to counter space and once bickered so viciously while preparing separate meals at the same time that we instituted a policy that we can't hold words we speak when hangry against one another. I'm sure our relationship would be less fraught if we didn't see each other all the time and if I didn't still rely on her so much.

Neither of us would have chosen this situation, but I know enough people who've lost their mothers to recognize that extra time with mine is a gift. I've gotten to know my mom as a person, not just a parent, had the chance to help her with everything from technological breakdowns to wardrobe crises, and when one of us has a bad day, we never have to rant alone.

We may not be best friends who share our best outfits and most intimate gossip, like Lorelai and Rory on Gilmore Girls, but nor are we at the other end of the mother-daughter spectrum: Grey Gardens. We have just one cat, limit our garbage to the trash can, and have never been known to have fleas. Although we butt heads sometimes, she's still my favorite person to talk to. No one else will follow me on a conversational voyage from Brexit to Kate Bush via the crimes of Ted Bundy, and no one makes me laugh harder.

When I'd been home for about six months, my doctor referred me to a counselor who asked about my goals for the future. We sat facing each other in stiff-backed pleather chairs as I cast my eyes around the large bright room, trying to come up with something. Finally, exhausted and defeated, I shrugged.

"Oh come on," she said. "You don't want to live with your mother for the rest of your life, do you?"

I knew she wanted me to say no, that this was supposed to be the ultimate threat, but the truth is, life could be a lot worse. If I hadn't been welcomed back, it would be.

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Diane Shipley

Diane Shipley is a freelance writer living in the U.K. and covering health and culture for publications on both sides of the pond. Her writing has appeared at The Guardian, Literary Hub, The Washington Post, Decider, Mashable, and more.