When Do You Tell Strangers That You Have MS?

Immediately after getting diagnosed with multiple sclerosis, I didn't really tell anyone. I was so secretive about the matter that I scraped through my PhD defense — the moment that I had been working toward for six years — almost doubled over with pain from the MS "hug." I was so fatigued that I remember putting my head on my knees and falling asleep in the hallway after I had been excused so that my committee could discuss my fate. When a point in my thesis was criticized, I wept, overwhelmed by the entire emotionally and physically painful experience.
 
I didn't tell most people that I was close to about my diagnosis. I did share the news with some family members, but even then I was vague about the details. I certainly had no urge to tell strangers that I had MS.
 
After a couple of months, however, I got more used to the idea that I was now a person with MS. I decided that by acknowledging it openly, I was going to gain power over my diagnosis. MS couldn't hurt me if I put it out there for the world to see. I told my circle of friends, then a wider circle of acquaintances. When I ran out of those people, I started sharing with strangers.
 
I dare say that I "overshared" about my MS. I told people about my MS when I was standing in line at the grocery store, checking out library books or petting their dog. I didn’t really notice at first that many people didn’t quite know how to react to this strange woman telling them about her disease — a disease that many people perceived as crippling and devastating. To their credit, many people were sympathetic. However, a large percentage of these strangers just wanted to get away from me — I made them uncomfortable, overstepping social boundaries and revealing stuff that was really none of their business. They didn't know how to react, not knowing whether I was brave, crazy or desperate.
 
After awhile, though, I no longer felt compelled to dump my story on anyone with whom I made eye contact. I guess I found a balance, an uneasy peace with my disease that required more looking inward.
 
Now I am more moderate, I think, with how I discuss my MS and with whom. Clearly, in my role as a person who writes about MS, I have an outlet for discussing MS-related issues. However, talking about MS to people who are also living with the disease is different. We are all in this together and I don't hold back much. I do not feel like we are strangers.
 
With people who do not have MS, however, usually there now has to be a pretty good reason for me to tell them about my MS. I will share if, for instance, I have a symptom that is bothering me at the moment. By this, I usually mean something visible, like a tremor, that is pretty obvious to both of us. It could also mean that I am feeling fatigued or confused and would like to make things easier for both of us by lowering expectations of myself and my performance in a situation.
 
I can also tell them in a way that does not make them uncomfortable. If I have a pretty good rapport with the person and the timing seems right — not within 30 seconds of meeting them, for example — I can usually find a soft and easy way to mention my MS. In no way do I ever want to convey that my MS is "no big deal," but I also don't really need to dump all over someone with the full reality of living with the disease.
 
There are many nuances and microdecisions that go into when and if to reveal one's MS status to people. Certainly, the question of whether to disclose during a job interview is not to be taken lightly and many people will warn against this. We also all have our ideas on when to reveal our MS to someone we are dating — some say immediately, others say wait until it is serious.
 
However, when it comes to sharing with strangers whom you will probably never encounter again or who have a limited role in your life (your favorite waitress or the neighborhood mail carrier), how you proceed is up to you and may differ with each circumstance.
 
So, what about you? When do you tell strangers that you have MS? How do you tell them?

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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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