I live with a disease that worsens with stress. I 'lean out' when I can, but I can't avoid it all.
In 2019, when my son’s preschool director called and said, “I think you need to take him to the ER,” the phone slid through my limp hands before I caught it. “Is he OK?” I asked frantically, my voice equally as shaky as the rest of my body. “He’s bleeding. You should come now.”
Worsening under stress when I need to function most is a cruel consequence of living with multiple sclerosis (MS). Sitting is the only way to relieve my shaky legs, but I had no time to rest. Getting into the car, ignoring the flare that had already begun spreading through my body like wildfire, adrenaline was my only hope.
Over the next hour — through picking up my injured 4-year-old, witnessing the deep gash in his forehead, and driving to the hospital with legs devoid of energy — my nervous system collapsed from the weight of fear.
My symptoms worsen with stress
Stress can flare symptoms that have been at bay for months in mere moments, and it can take days or weeks to return to baseline. Sometimes, persistent stress causes a more gradual decline. In December of 2015, my husband and I scheduled a much-needed vacation without our children. In the days and weeks leading up to my departure, my body gradually grew weaker. The stress of worrying about how my body would react to increased activity induced a flare that brought my fear to life: Only days before, we had to cancel our vacation because I was struggling to walk.
In the month leading up to my son’s bar mitzvah in the fall of 2024, stress settled into my body in the form of excitement and anxiety. I was eagerly awaiting the celebration, but feared my legs wouldn’t let me dance through the evening on the one day I most wanted to feel normal. I succumbed to stress by weakening and fatiguing, and on the morning of one of the most special days of my life, I was a depleted version of my already disabled self.
Then, in March of 2024, my husband had his first routine colonoscopy. A few days later, he was unexpectedly diagnosed with colon cancer, and the fear of uncertainty triggered my symptoms, weakening me when I was the one who needed to be strong for him. I pushed through a stress-induced flare while he underwent surgery to remove a portion of his colon. I wish I could navigate life’s hurdles in a dependable body, but that is something MS has taken from me.
I try to limit stress but it’s impossible to avoid altogether
Ideally, limiting stress means by body functions better. Focusing on the moment rather than what could go wrong in the future is my goal — but I’m still a work in progress. I take on less work as needed, limit volunteering at my kids’ schools, and ask for help when their extracurriculars become overwhelming.
We hired someone to clean our home bi-weekly, and we purposely don’t overbook our social lives. Most importantly, I’m learning to separate myself from situations and people who strain me unnecessarily by saying no and cutting communication to preserve my health.
But aside from avoiding unhealthy relationships and eliminating some stressors throughout the day, I’m also trying to accept that part of living with MS is repeatedly experiencing the cascade of symptoms that begin instantly under stress, often leaving me feeling a lifeless version of myself. I can’t dodge every stressor or the emotional reactions that follow — and I refuse to become numb to calm this disease.
‘Leaning out’ only helps so much. I can’t hibernate when a loved one is facing a medical scare, and turning my disease off isn’t an option. As a mom, I want to be present in pressing moments when my kids need me and while they’re celebrating life’s monumental milestones. My body may decline in response to stress, but it’s a reminder that I’m alive and thriving despite this disease, and that makes it all worth it.