I realize that having a full-time job as well as Duchenne muscular dystrophy can be challenging. Balancing my time between self-care, including stretching and doctor’s appointments, and work can be physically and emotionally draining. That’s why you must find a job that is a good fit for your situation.
This summer, when I worked at The Washington Post, it felt as if I was living in a journalist’s dream. At the same time, I pushed myself to produce work that lived up to those high expectations. In a few instances, I took my dedication too far and ignored my body’s need for rest.
Taking my work ethic to extreme levels isn’t healthy or sustainable. If I could have done anything differently, I wouldn’t have bitten off more than I could chew. I was tempted to push myself past my limitations because I knew that every article I was assigned was a once-in-a-lifetime opportunity.
As I move to a new job, I’ve learned a lesson from my summer role. My first column with BioNews Services was published in March, and I’ve helped produce a video for the “30 Days of MD” series. When I was offered a full-time position, it felt like an opportunity to leverage my experience with rare disease and journalism.
One of the main reasons I chose this position was because it worked well for both parties. I help BioNews to produce content for many rare disease websites, and they understand my condition and appreciate my need for rest and care. It’s a remote position, so I can work from home and be close to family and friends who can help me. I can also freelance and sell my work outside the organization.
Is a position out there that works well for you? It doesn’t have to be a full-time role; it could be a combination of positions and employers. Your job shouldn’t affect your ability to lead a healthy and productive life. Instead, your role should help you to follow that path. I’ve written on this topic previously, but I believe that a job is a huge step toward greater independence, and it feels fantastic to be rewarded for your hard work.
Think about your unique skills and point of view. Many organizations need people with different perspectives. You should look for a place that will value you and support your situation. Ask questions and see for yourself whether a prospective employer understands and is willing to meet your needs.
Everyone should have the opportunity to work, and within our connected world, it’s now easier than ever. People deserve to see what those with disabilities can do despite the connotations of the word “disabilities.” We all deserve to enjoy the purpose and fulfillment of a job.
Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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