My approach to work options while living with myasthenia gravis

I think that one of the hardest parts of living with an invisible disability is having to reconsider one’s career.

From 2017 to 2026, I explored almost every work model imaginable: freelance, remote, hybrid, and full-time. Each came with its own advantages and challenges, and, surprisingly, this is one of the rare things I’m grateful for in terms of myasthenia gravis (MG).

If I hadn’t been diagnosed with MG, I’m not sure I would’ve explored so many different professional paths. In a strange way, MG pushed me to build a career, leading me to create my own agency. So, for that, thank you, MG.

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Freelance and remote work

After my diagnosis, remote work was the first solution that came to mind. I stopped my studies at the university and started looking for opportunities to work from home. I applied everywhere I could find, searched for freelance opportunities, and enrolled in an online degree program.

Studying online was an amazing experience, but working remotely came with challenges. I had to learn how to be consistent, manage my schedule, and be productive while navigating flare-ups and unpredictable symptoms.

At first, I thought working from home was the perfect solution. There’s no commuting, no physical effort required, and no pressure to leave the house. But something unexpected happened: I felt isolated.

I slowly lost contact with friends and, surprisingly, spent less quality time with my family, despite living under the same roof. Since I no longer needed to leave the house, resting became my default activity. Sleeping became easier than moving. Ironically, this did not help my MG as much as I had expected.

My muscles became weaker from inactivity. I remember a period when lifting my neck became extremely difficult because I had developed the habit of working while lying down with a pillow supporting my head. That was one of the scariest moments of my life.

I also found myself burdened by procrastination. The lack of structure made it difficult to distinguish between genuine MG fatigue and simply avoiding work.

Freelancing made this even more complicated because I could take breaks between projects and spend days doing absolutely nothing. Remote employment, on the other hand, entailed meetings, deadlines, and managers who helped me maintain a healthy rhythm.

I think I prefer remote employment over full-time freelancing when symptoms are severe. Not only is it less stressful financially, but it also provides structure and stability. At the end of the month, I know I’ll be paid, and I can focus my energy on managing my health instead of constantly searching for the next client.

I think freelancing can be a good complement to remote employment, rather than being my primary source of income.

Hybrid and full-time jobs

If I had to choose which work model best suits me, it would be hybrid work, which provides me a good balance. I get the stimulation of leaving the house, seeing people, moving my body, and feeling part of a team. Then I have remote days to recover while staying mentally active. I often describe it as working physically for two days and recovering for one.

Even now, while running my own agency, I naturally organize my schedule around a hybrid rhythm. It keeps me fulfilled without pushing my body to exhaustion.

Full-time, on-site work was another surprise, as I expected it to be impossible for me. Instead, I discovered that it was manageable, just tiring.

With the right medication, proper nutrition, good sleep, and gentle exercise, many people with MG can maintain full-time employment. I helped coach a friend with MG through her transition into full-time teaching, and she is doing wonderfully today.

I think one of the biggest challenges is that everything requires more planning. Every step, every commute, every meeting, and every task must be organized with energy conservation in mind. Living with myasthenia gravis means constantly calculating how much energy you have and where you want to spend it.

Finding your own formula

The biggest lesson I learned is that there is no universally correct answer, as everyone is different. Some people thrive as freelancers. Others need the stability of full-time employment. Some, like me, find their sweet spot in a hybrid model.

The important thing is to experiment when your financial situation allows it and to be honest with yourself about what your body needs.

Depending on a person’s situation, living with myasthenia gravis doesn’t necessarily mean giving up on career ambitions. I think it just requires a different approach.

The right strategy, realistic expectations, and a deep awareness of what affects your energy, symptoms, and overall well-being are key.

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.