When Meeting New People, When Should I Disclose My MS?
“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.
Lifelong friends
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.
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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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Comments
Pik
I'm hesitant to tell. My job,boss&close worker new,but didn't talk of it. Don't work anymore. Recently told bank teller.Now she understands. When I'm in pain walking slowly with cane,wobbling movements,people ask if I'm ok. I answer is "this is what it's like to live with MS."
At times comments to me is i know someone with it. So they know. I have been more open now in 7yrs,but when time is right i tell. If someone doesn't know the conditions, hopefully they research it & learn about it. I tell people my nerves in my neck are like a frayed electrical cord. It shorts out,& blows the fuse.
Sadmira Dervisevic
In regards to when should one disclose that they have MS when meeting new people, I feel it depends on one's situation. If one's symptoms are visible then one should disclose their MS.
Alex Constantino
I’m pretty self conscious of my MS gait so I just tell people I meet. I’ve learned not to fear pity or being judged because it’s borne of ignorance. Plus, I tell people, health struggles and changes in cognition and mobility are on the menu for us all- it’s just a matter of when.
lynn kouf
This blog was great to read. I, too, was diagnosed with MS about seven years ago, and I often wonder when is the appropriate time to mention to someone that you have MS.
I feel pretty lucky in that I’m almost 66 years old so I really don’t have a stigma about it at all, and I’m doing pretty good, I just walk with great effort. And I do use a cane. So when people ask about why the cane, for the last couple years I was able to write it off to knee replacement and two back surgeries. But now that I’m completely healed from those, I need to be a little more upfront now.
So I just say I have a MS and I need the cane for balance, and pretty much everybody’s like that’s no big deal because I don’t make a big deal out of it. I look at it like raising kids, ( I have four) If you say something with confidence to them, they will respond In kind and actually feel confident for you. Hopefully this helps, at least it does for me.
jonathan elsenbroek
I make it up as I go. I often want people to know I have MS because I am not a normal able-bodied young man (I am a single 50-year-old man.). You may think me able-bodied and I may look ok, but truth be told, MS is a motherfucker and only I know the severity of my condition. And sometimes even I get confused.
I don’t go around broadcasting my illness but when my actions are compromised, I often want people to know there is a reason. I still drive, not as much as I once did, and when my vehicle needs serious maintenance like replacing a lightbulb, I ask complete strangers for help. I usually tell them I have MS. Or carrying a tray of food at a restaurant can be problematic.
I don’t work anymore thanks to MS and as a result my social interactions have changed dramatically. As a lawyer, I walked into the courtroom with my cane. I told the judge I would rather tell them when my MS started interfering with my job than being told I should step down. And that’s how it went down.
Life today certainly is not what I expected 10 years ago when I was an able-bodied young man. I share my medical challenges with people when I think they should know. Maybe that’s right, maybe that’s wrong. I don’t know. I did not get the owner’s manual with this condition, so I make it up as I go.
JE
Thea
This was interesting to read and also the other comments. There are a LOT of people in my life who still do not know I have MS and im still not sure the reason why im reluctant to share it. I was diagnosed a year and a half ago. It was rough! I feel I am on the other side of it now where Ive forgotten how bad it was for me. I am very positive about it and my future, yet I still feel weird telling people I know about it. Recently my hand was forced to tell my bosses at work about my MS due to DMD's I had taken resulting in a lower immune system and the Covid-19 pandemic. Due to the pandemic I have to stay home for 12 weeks. I felt fine telling them.....so i think tell people if its relevant/necessary and theres some benefit.