The Career Debacle

Managing a career with Gillespie syndrome

Managing a career with a rare disease can be challenging, especially if you have just learned about the condition, like my ultra-rare Gillespie syndrome. Though I wouldn’t quite call it a disease, as it is not disabling, I do appear intoxicated 24/7.

I have many stories I could share, from dealing with public school to overcoming challenges with the police, but today I want to focus more on my career.

My career journey

I'm a 46-year-old male who has never had a clear sense of direction, so my career has become my main focus. I work as a technician for a medical device manufacturer, and I’ve been doing this type of work for the last 28 years. I entered manufacturing 28 years ago and have been in the medical device industry for the last 15. The education I needed for my technician role was mediocre at best, but it provided me with the skills I needed to secure a job in a clean environment. It’s monotonous work, but it’s what I fell into.

Challenges at work

I’m usually pretty good when given specific tasks, and I excel at producing results no matter what role I’m in. However, how far up the ladder do you think someone can get if they look like they’re three sheets to the wind? I understand why people would assume I am intoxicated if they see me without knowing my situation. Everyday people don’t know about ataxia, dysarthria, or ptosis. They don’t understand the anxiety that develops when one is not understood. From an everyday point of view, I’m just a wobbly guy who looks exhausted and should be off his feet—certainly not someone who can be trusted.

Finding understanding

My story is rare because my condition is rare. Finding out about this condition three years ago has been a lifesaver. Until then, I thought I was just a goof.

How has your rare disease impacted your career? Share in the comments below!