In life with myasthenia gravis, it’s hurry up and wait

If there’s one lesson the Army drilled into me that still applies today, it’s hurry up and wait.

I thought I’d left that phrase behind, along with my combat boots and field rations, but living with myasthenia gravis (MG) proved me wrong. That old idiom fits perfectly in my life with chronic illness.

The waiting began when I first started experiencing symptoms of MG. Like so many of us with this disease, getting diagnosed was a long exercise in patience. Doctors first had to rule out all other possibilities. It felt like being permanently on standby. I was ready to act but had to wait for someone to say, “Go.”

I’d gotten used to that in the Army. I’d rush to pack my gear, then line up and sit for hours before anything happened. A similar rhythm marked my diagnostic journey, with test after test and referral after referral being “hurry up and wait.” Even after I was finally diagnosed, the waiting continued.

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Starting a new medication or treatment plan feels like a mission briefing followed by an indefinite hold. I’ll take that first dose and hope it helps, but don’t get instant feedback. It can sometimes take months before I know if the treatment is doing anything to help. Meanwhile, life goes on while I wait for my body to respond. It’s not like popping a Tums for heartburn and feeling better in a few minutes. MG has its own timetable, and none of us gets a copy of the schedule.

“Hurry up and wait” doesn’t describe just the medical side of MG, either; it’s woven into nearly every aspect of life. I’ll rush out the door before my muscles tire, and then wait in the car until I have enough energy to continue. I’ll scramble to get a few chores done before fatigue hits, then wait for my strength to return. Even rest becomes a form of waiting, as I anticipate feeling normal again, whatever that means on a particular day.

The unpredictability of MG makes the waiting harder. There’s no clear pattern, no guarantee that what worked yesterday will work today. I might plan my day around the best hours, only for my body to change the schedule without warning.

In the Army, unpredictability was the norm. We trained for every possible scenario, but no plan survived first contact with reality. MG feels the same way. I can plan my meds, meals, and to-do list, but one unexpected flare and everything is out the window.

There are moments when Army toughness tries to take over, and I want to push through exhaustion or ignore my body’s limits. But MG doesn’t negotiate. I’ve had to unlearn parts of that warrior mindset and replace them with compassion for myself. In a way, knowing when to stand down is a type of courage.

Some days, I handle the waiting gracefully. Other days, not so much. I get frustrated when I can’t predict how much energy I’ll have or when the simplest task feels like running a marathon. But I’m learning to recognize small victories, even when I’m frustrated, such as a morning when my hands are steady, an afternoon when my speech is clear, or an evening when I don’t experience debilitating fatigue. Those moments might seem minor to someone else, but to me, they’re proof that the waiting isn’t in vain.

Living with MG has changed how I view time and measure progress. It used to be with big milestones, but now I measure it in moments of clarity and strength and hours of helpful rest. The waiting still tests me, but I’ve learned that slowing down doesn’t mean giving up; it means listening to my body and giving it space to recover in its own time.

“Hurry up and wait” used to feel like a punishment. Now I see it as a strange kind of teacher. It reminds me that progress can’t be forced and healing can’t be rushed. Sometimes the best thing I can do is to simply be still.

I’m still learning to make peace with the pauses, to breathe through the waiting instead of fighting it. Even though MG demands a lot of patience, life doesn’t stop while I wait. It just asks me to move at a different pace.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.