Being a business owner while living with myasthenia gravis

H.I.T.

Honesty. Integrity. Transparency.

These are three values that I use as principles in my personal and professional lives. They were presented to me as H.I.T. by a friend, a fellow veteran and business owner. I use them when I discuss my life with myasthenia gravis, as well as in my work as a disabled entrepreneur.

This past weekend, which included Veterans Day in the U.S., I held an open house and soft opening for The Nook, a new business I started. It’s a coworking space and business center just over a mile from my home. I believe my community needs these services, and I’m hoping that moving the headquarters of my website design business to this location will help me improve my work/life balance.

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Falling into crisis

I’ve been down this road before, sort of. In 2019, I worked as a graphic designer for an independent print shop, where I did well at setting boundaries and keeping my work to 20 hours a week. But when the shop faced closure because of the COVID-19 pandemic in 2020, I decided to buy it and keep it going.

Those 20-hour weeks turned into 60+. I wore all the hats and didn’t listen to my body as it was trying to tell me I was pushing too hard. I performed graphic design, website design, customer service, printer maintenance, and employee training, in addition to all the other tasks required of running a business. I failed to delegate.

Then came my first myasthenic crisis, in the summer of 2021. By December, I had to close the shop for good. I’d known better than to take on so much, but I was trying to prove to the world that I was capable of “all the things.” I felt that I’d failed in multiple ways, the worst being that I didn’t keep the promise to myself to not allow work to take over my life and affect my health.

It was a lapse in judgement that affected not only me, but my husband and son as well.

Flare fear and entrepreneurship

When the idea of The Nook came to me, I told my husband and my best friend, Jamie, that I was going to need help making sure I didn’t overdo it. The nice thing about having an amazing support team is that I have people I trust to keep me in line.

Nonetheless, I’m afraid of making those same mistakes and working myself into another crisis. As far as I’m concerned, one is more than enough!

But I’m more afraid of not living my best life. For me, that looks like continuing to push the boundaries of my capabilities so that I keep growing. I don’t do “idle” well. Acknowledging the possibility that I may work myself beyond what I should, I’ve been consciously placing restrictions on my activities.

For example, I’ve set the staffed (or open) hours for The Nook to be from noon to 7 p.m. because I need the mornings to medicate and get ready for the day. I’ve worked out a deal with a friend of mine to be there on Tuesdays so the business can be open despite my biweekly infusion schedule. I’ve bartered cleaning services with two different women in exchange for my website design services, which lets me have weekly cleaning done — and I don’t have to do it.

As I’ve otherwise been preparing for the Nook’s opening, I’ve been honest about my disabilities and transparent about what that means for the business and its patrons. As a result of this honesty and transparency, I’ve garnered much interest and support from the community.

Working and owning a business when you have myasthenia gravis is possible. From having a good treatment plan, to being honest about my limitations and capabilities, to the various fail-safes I’ve put into place, I’m confident this next business venture will be better than my last.

Are you able to work while navigating myasthenia gravis? Are you a business owner? I’d love to hear what you’ve found that helps in doing these things. Please leave your tips or anecdotes in the comments.

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.