How I respond when people ask me, ‘How do you do it?’

Work-life balance is complicated when myasthenia gravis is in the picture

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by Shawna Barnes |

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“How do you do it?” I’m asked this question a lot by friends, family, and even new acquaintances.

I have myasthenia gravis (MG), so the topic usually comes up in conversation. After small talk, I’ll often end up explaining MG and how it affects me. The question usually follows a discussion about how bulbar symptoms limit my ability to speak and to eat, how general weakness affects my mobility, and how problems with my diaphragm and internal intercostals challenge my breathing.

My response is usually “very carefully,” delivered with a laugh.

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Planning and preparation

I’m currently celebrating the launch of my business, a coworking space and business center called The Nook. This got me thinking about how I do it all. Achieving the delicate balance of entrepreneurship while battling MG has taken me years of introspection, suggestions from my husband, and input from my healthcare team.

A lot of planning is involved to reach a work-health balance, including making time for self-care and treatment and understanding how my health will affect my ability to be at a particular location. My husband and I divide up the chores at home, and by that I mean he acknowledges he’ll do most of them if I make sure the cat’s litter box is cleaned by Monday night. For meetings and doctor appointments, I must factor in time in between for rest and recuperation.

Preparation is just as important to me as planning. This includes preparing customers’ expectations about what I can and can’t do. I must also prepare my mindset and acknowledge that I won’t be able to do things I used to do. I remind myself that it’s unfair to compare the current me to who I was before MG.

Each night, I prepare a to-do list for the next day. This habit allows me to recognize if I’m trying to do too much and, if so, find ways to either delegate or reschedule.

I also plan rest time throughout each day. Sitting and working on website design might not seem overly taxing, but it can cause mental fatigue and affect my vision. I usually rest about every couple hours, coinciding with when I need to take my medications.

I wear a smart watch to track my steps, which helps me pace myself throughout the day. If I’ve reached my step goal for the day but still have fours hours of work left, it’s an indicator that I’ve been walking around too much. I’ll then plan more rest time for the remainder of the day.

I prepare my work space in a way that suits me regardless of what public perception may be. I have a couch and a rocking glider chair in my office area. My service dog usually takes his place on the couch, and the glider allows me to put my feet up, which helps minimize the swelling in my legs. I know what my body needs, and to pursue the passions that provide me purpose in life, I do my best to have the proper personal accommodations.

I set up the business phone lines with voice over internet protocol so that any device with the app installed can answer calls, including my laptop and phone. The application also has texting features so that if I’m having difficulty speaking on a particular day, I can still communicate by typing out responses.

Some people think I’m nuts for chasing my dreams and owning a business while managing the challenges of MG. After they ask how I do it, they’ll usually wonder why.

The answer is I don’t like being idle and I love helping people. For me, it’s really that simple.

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.


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