The white-haired doctor shook his head. “MS doesn’t cause depression,” he said. A row of diplomas hung on the wall behind him, all from renowned institutions, and he spoke with the northeastern accent that in Texas meant wealth and education. It was an intimidating amount of authority, but I couldn’t just give up.
“She cries a lot,” I said. “And she says such strange things. Are you sure it’s not affecting her mind?”
“It’s not connected,” he said, now turning away. The conversation was over.
I was disappointed, but not surprised. It was 1988. I was female and a teenager, with a drawl to boot. Why would he believe me when there were no tests or studies to support what I was saying? MRIs weren’t being used to diagnose MS yet, so the doctors didn’t explain that it caused lesions on the brain. And while it should have been obvious that the simple fact of having MS might make a person depressed, that wasn’t his field. Mental health hadn’t entered the public consciousness the way it has now, at least not in Texas. Doctors weren’t trained to think of it as part of general wellness.
But regardless of what the doctor said, the symptoms only got worse. When I came home from school, I often found my mom sitting in the same place I’d left her that morning, her face splotchy from crying. She yelled at us over any little thing and confused movie plots and news stories with real life, so that my brother and I had to constantly fact-check her. Worst of all was her talk about suicide. For three days in a row, she lay on the couch and refused to eat, saying that she was starving herself to death. She said she was too weak to kill herself any other way.
We came up with new schemes to cheer her up, like plucky kids on an after-school special. But this wasn’t TV. We were powerless to change the situation. As much as possible, I tried to stay close.
The only thing that made me feel better was writing in my journal. English was my best subject, and I’d started asking my teacher for feedback on stories and poems. I promised myself that someday, I’d use that skill to help others affected by this disease. It offered some meaning for what I was living through.
Making the connections
Now, years later, I can see just how complex my mom’s situation was. She was dealing with myriad issues, some completely unrelated to MS, any of which could have caused depression in middle age. She’d grown up in a house where verbal and physical abuse were common. In her twenties, she’d been attacked by an intruder and never dealt with the resulting trauma. Then, in her thirties, she’d developed this progressive illness with no cure and no effective treatments. This meant she was stuck in an endless cycle of loss and grief as the disease course continued. On top of all that, we now know that MS was in fact damaging her brain, causing cognitive problems and depression.
Eventually — and here’s the good news — the medical establishment caught up to our experience. Doctors came to understand better the link between MS and depression. We found an empathic doctor, and my mom got on anti-depressants. Her disease progressed to the point that we had to hire caregivers, so she wasn’t alone in the house all day. She got an MRI and we finally had proof for what we’d suspected all those years.
Around this time, the National MS Society in our area also started a program offering free therapy. No one else in my family was interested, but I jumped at the chance. Armed with some new mental health tools, I went to college and then got an MFA in poetry. I published poems about experiences I’d had growing up with MS while I made a living writing for the web. Every now and then, that promise I’d made to myself as a teenager would come and tap me on the shoulder. If I was in the market for a new job, I’d go and check the National MS Society job page. In 2021, during the Great Resignation, I looked again, and this time they were hiring writers.
I applied, got a job, and six months later, was assigned to work on a new guide to mental healthcare. There, I saw the raw materials for helping a family like the one I grew up in. I knew how relieved I would have been to read these pages as a teenager. And I could see that the skills I had now could make the guide clearer and more engaging. “This could be good,” I thought. I settled in at my desk and got to work.
Editor’s Note: For more on talking to doctors about your MS symptoms, including depression, see “Advocating for Your Health.”
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