“Hi! My name is Stephanie and I have multiple sclerosis and narcolepsy.”
While I don’t introduce myself this way, knowing the right time to share this information can be challenging. When I meet someone, I wonder if I should mention it or wait until an appropriate situation arises. It can be better to disclose my health conditions early on, but sometimes I don’t mention it at all.
Dealing with frustration
Having multiple sclerosis and meeting new people can be frustrating, especially when they know nothing about the disease. Many people don’t know much about MS. When I meet people, I feel as if I should give them a lesson on the condition before sharing how it affects me and how I manage my life with it. The fear of being pitied or treated differently is always in the back of my mind, so I proceed with caution. Sometimes I think that explaining my disease can help me, while at other times, I don’t mention it.
Meeting new people
When I meet someone new, I don’t refer to my MS. There is a time and place for everything. I’m reluctant to mention it due to a fear of being judged. People with MS have varied symptoms, and everyone is on their own journey. Some may understand when you tell them about MS, while others may look at you differently due to their opinion of the disease.
When I started my latest job, I met Taylor, the person whose position I was filling. We worked together for a short time, and during a conversation I mentioned that I have multiple sclerosis and narcolepsy. She told me that she has leukemia. She shared the struggles that she faces, and I could relate to many aspects of her situation. We had an instant connection due to our challenges with major, life-changing diseases that no one can understand unless they have them, too. Though we spent just two weeks together, I feel as if I made a lifelong friend.
Starting a new job
Dealing with narcolepsy at work is an ongoing struggle. While I take medication regularly, it isn’t always effective, and staying focused on tasks is hard. When I was offered my current position, I told them about my medical problems immediately. I explained my narcolepsy, how it affects me, and what I do to control it. I keep doctors’ notes on hand and inform them of upcoming appointments as soon as they are scheduled. While I was frustrated by the need to communicate my condition with a prospective employer, I concluded that for me, it’s better to be upfront about my medical condition.
The great debate
Writing this column has made it easier to share my journey and explain my conditions. Despite having MS for almost eight years, I still hesitate about whether to share it or not. I am curious about when others share their medical challenges with people. Having a medical condition is nothing to be ashamed of — you never know what others are dealing with, too.
Note: Multiple Sclerosis News Today 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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