Myasthenia gravis taught me how to ‘fail forward’

Balancing the requirements of MG management and productivity is tricky

Shawna Barnes avatar

by Shawna Barnes |

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I failed at being a business owner. Big time.

I had to lay off employees and break contracts, and I felt like I had let a lot of people down because of myasthenia gravis (MG). I’m still paying debts a year and a half after closing the business because I chose not to file bankruptcy.

Then I thought it would be a brilliant idea to become a business owner again by relaunching my web design business.

I failed — forward.

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Comparison is the thief of joy when you have myasthenia gravis

How do you fail forward with MG?

When you live with a chronic illness or a rare disease like MG, you become accustomed to trying new ways to accomplish tasks and push that proverbial line in the sand to maintain independence. When one way doesn’t work, you continue to search for other ways that do. This is failing forward.

When presented with a care team that doesn’t seem to care, you insist on being heard and treated. It took me a handful of medical professionals in the neurology department and advocating to be seen by someone who was familiar with MG before I started building a team that cared. I continued to fail forward at being heard until I found someone willing to listen.

Whether you realize it or not, daily life with myasthenia gravis is a case study in failing forward. But how might this apply to being a business owner?

Failing toward purpose

Part of the human condition is believing we have a purpose in life. At the very least, for many, that purpose consists of feeling fulfilled in some sort of occupation, which is true for me. I’m unable to sit on my tuchus and collect a disability check. I feel the need to be productive in some way, shape, or form.

For many years, that looked like me being an art instructor at a retreat in Maine for veterans with disabilities and their families. During that time, I also taught arts accessibility to educators at various conferences and workshops.

In 2019, when I thought my MG was well-managed, it looked like getting a “real” job as a graphic designer at a local print shop that I bought the next year — and then had to close in 2021. I failed to maintain my physical boundaries of what I could realistically do without working myself into the ground. I worked myself right into a myasthenic crisis that became the tipping point toward failing as a business owner.

I failed forward and landed in a puddle of forced self-care. Shortly after I closed the shop, I got COVID-19 and was bedbound for over a month. When we moved to Wisconsin, I was still quite weak and ill. Recovery had just begun. These major back-to-back events forced me to reevaluate how I defined my worth, usefulness, and purpose.

What I knew

I knew that I needed a creative outlet, be it sculpting, graphic design, or website design. Having a creative outlet was paramount for not only my mental health but also my physical health. Many of the activities related to my creative pursuits functioned like occupational or physical therapy.

I also knew that I wanted to help others. If I could turn my pain and suffering into a gain for them, my pain didn’t seem quite so overwhelming. That’s one of the reasons I write this column.

I knew that I needed to do something from home and establish boundaries, such as working only 20 hours per week. End of story. No ifs, ands, or buts.

Failing forward to launch

With all of these lessons learned from a multitude of failures, I relaunched my website design business, S. Barnes Designs, LLC, last January. I have hard boundaries for my clients. I have implemented certain tasks that are automated. I teach my clients how to value me and my time.

Just like I have had to teach family and friends about my boundaries and how to treat me (not with kid gloves), I must do the same with my clients, which is hard. I’m still working on it.

My husband helps me by reminding me of my boundaries, encouraging me to take breaks when I get lost in the zone, and supporting my drive to do something more with my life.

Myasthenia gravis doesn’t have to be the death sentence many believe it to be. For me, it has been a catalyst for learning how to fail forward with style and grace.

How are you failing forward? Please share in the comments below. 

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.


Delia Wilson Lunsford avatar

Delia Wilson Lunsford

I’ve been a web designer/ developer for 23 years…because I couldn’t physically work for others long before my MG diagnosis 18 months ago. I never could make much but it was preferable to being fired. I still want to feel productive. It is central to me and my self worth as is helping others. I now live Maine by the way. Too bad you moved! We would make a great team! Thanks for this. It resonates on so many levels.

Shawna Barnes avatar

Shawna Barnes

I'm glad that it resonated with you Delia. I hope Maine treats you well. We lived just outside of Belfast, and in northern Maine by Fort Kent. -Shawna


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