Saturday, June 16, 2012

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?


  1. Since my diagnosis, I have returned to school and not like in the 89's when I was on academic probation, I am now on the dean's list and Phi Theta Kappa and awarded Who's Who Among American College/University Students in my school.
    But my concern is just that, will all this education do me much good. I am a chef and I worry about will I be able to keep up and fulfill my duties?
    My overall goal is to get my degree as a Dietitian with a Culinary background...

  2. I am not sure how long you have been fighting MS. I have been fighting MS since I was 16yrs.old. That makes the long fight 21yrs. & still counting. I am a Single Mother of a great little girl. She is the reason I'm still walking today. Everyday is a fight. I Fight to hide the pain from her. I fight my body so I can play with her. I hate to say it, but I have to fight the people that look at me & say,"You look good for having MS."What am I to look like? Then what energy I have left. I fight for my daughter who has Autism. I am here because God gave me a reason to be here. He gave me a daughter that needs me. I have helped her become a smart little girl & I need to help her Become a smart young lady. What I am getting at is, You need to FIGHT for what you think is important to you. Don't ever stop fighting, because when you do. That is when you don't have MS. MS has you & you don't have a chance.

  3. When I was diagnosed, I dealt with the issue of whether to tell my boss and co-workers. I chose to tell them and received nothing but support. Schedule adjustments, understanding when I needed a day off, a desk close to the rest room. It was the right decision. For more than two years after my diagnosis, I continued to work. (It was also invaluable to have the health coverage to help pay for doctors, MRIs, prescription drugs etc.) When I was no longer able to work, the personnel office was very forthcoming with information about disability, and now I have long term disability insurance while I wait to hear from SSDI. Definitely the right decision to let them know. I was fortunate to work for a company that was so supportive.

    1. I also felt compelled to tell my supervisor about my condition because I knew it would be more detrimental if I chose to keep it to myself. I work between schools and travel is required. I felt she would be more understanding if I was upfront so that she (supervisor) could adjust my schedule/location of schools-for my convenience.
      I personally think people with MS have to grow tough skin because of 1) what we have to deal with physically, emotionally and psychologically 2) dealing with symptoms being both visible/non-visible 3) because we have to learn to adapt and conquer those things that sometimes cause people to judge us based on how they think we should be handling our disease. Therefore, I think we should tread lightly in sharing this information with those that are not in it for our good.
      I have made it a point to keep a positive mind and disregard those that do not have my best interest at heart and move on to the next task at hand. It requires too much energy to worry or ponder on things that is meaningless. I don't know about you guys but I need every bit of energy I can get. Wasting it on frivilous things, is not an option!

  4. i was an awesome worker and loved my job i never called in i was never late and a very hard worker...i had to take a medical leave because i ddin't know what was going on...then i got diagnosed with ms. so i took a year out off of work...when i decided to come back i told them i was diagnosed with ms..and they would not hire me back. i was physically fine and able to still do the work..but they still would not let me back..i still have not been able to find a job..i'm very upset because i don't like people to tell me that i can't do what i want to do. so i'm very careful on who i tell.

  5. I was diagnosis in 79 when there was not much one really was told by their doctor. We didn't have good health insurance and the only advice I had was my doctor to keep on living, have more kids. So for a long time over two decades I never told anyone I had MS. I was busy raising my four kids. When they got older I started working again at various jobs. All went well until at one job I was let go "because I was not fast enough". They treated me horribly and even lied so that I could not get unemployment insurance. I was devastated but did get another job that was okay and worked there until I could no longer and quit.

    I wasn't until 2005 and that we had better insurance and I cashed in my 401K to use for tests, etc. for applying for SSDI that I was more semi open about my MS. I was very lucky to get approval after only six months. I has been wonderful (although I would have a hard time supporting myself) at least I was getting about the same amount if I was still worked.

    When due to the recession my husband took another job to another state, I totally feel fine telling people I have MS. It is like a starting over for me. I don't feel uneasy talking about my MS anymore.

  6. I'm an open book & I put it all out there. I'm a "this is me, take it or leave it" kind of person. Most people don't even know I have MS, but I do t try to hide it. I don't walk around saying "look at me! I have MS" either.