Do you tell people that you have MS?

[amyrising]

I have only told immediate family and close friends...and my employer. While I believe it is the reason I have been let go (I am a liability), I'm not entirely sure it was the wrong decision. I thought that it might make them a little more understanding of the frequent mistakes I was making and my requests to have time off from time to time. In the beginning it did help and they were understanding. Once the cognitive issues peaked, and I asked for help....that was all she wrote. I think it may be a blessing in disguise down the road...I need some rest.

I'm not sure if I would do it again but I made what I thought was the right decision at the time.

[Tawanda]

I have only told immediate family and close friends...and my employer. While I believe it is the reason I have been let go (I am a liability), I'm not entirely sure it was the wrong decision. I thought that it might make them a little more understanding of the frequent mistakes I was making and my requests to have time off from time to time. In the beginning it did help and they were understanding. Once the cognitive issues peaked, and I asked for help....that was all she wrote. I think it may be a blessing in disguise down the road...I need some rest.

I'm not sure if I would do it again but I made what I thought was the right decision at the time.

A sobering story if you work. I do think working outside the home is really a huge factor in this decision...especially if you want to keep working outside the home! Nobody tells acquaintances everything about their life anyway...none of their business. Our privacy is getting harder and harder to control in this age of technology, but I am hoping we still have some control...

[Special Kay]

In general, I more often regret having told people than not having told them, at this stage in my MS.

I have not told any of my family or my partner's family. I really prefer that they not know. I do not have a close family, and my mother means well but is a big gossip and wouldn't be able to help herself telling the world -- even if in the name of doing good, and the "prayer chain." Despite my request, she told the world (people I did not know) intimate details of my divorce, so she lost the right to my personal information back then.

I have not told my employer, only one or two close personal friends from work (who have kept it confidential so far).

My close friends know, and since I also teach part time at a yoga studio, my colleagues and mentors there know, but my students do not (or at least I haven't make a point to tell them).

I can still pass for non-MS, and I prefer to do so as long as possible. I don't want people to know/think I am sick and I'd rather not think that way about myself. THere are a few friends that I regret telling because they always have to bring it up. They are being considerate, I know, but I'd rather be treated like I wasn't sick.

[Tawanda]

I can still pass for non-MS, and I prefer to do so as long as possible. I don't want people to know/think I am sick and I'd rather not think that way about myself. THere are a few friends that I regret telling because they always have to bring it up. They are being considerate, I know, but I'd rather be treated like I wasn't sick.

I agree (had to chuckle a bit over being on the dreaded "prayer chain"!).

BTW, fantastic about teaching Yoga! I practice "bad yoga", myself (always as far back in the class as possible) BUT even bad yoga has probably done more for me than any MS med!

[1936siols]

Talking about MS

I have always talked to those who have a right to know about my MS, family, friends others who have MS. There are times when it can't be hidden without lying.

I was asked to talk to someone with MS when I was in the hospital. She was there at the same time and having a very difficult time. I would not tell an employer or someone who had no business knowing.

[KatieAgain]

I wish I would have never told my parents...my Mother is ashamed of my MS and has forbidden me to tell any of the family. I actually live about an hour away from everyone so they can not see me in a flare and I avoid all contact with family members, even during Holidays. In fact, I think I just don't like my family.

I have not told the kids. My Mothers wrath is very harsh. When she dies, this will change...they have a right to know.

Everyone of my friends and neighbors knows I have MS, to include one cousin who lives down the street from me. They are all very supportive and protective of me, but I do not let them get too involved.

If I was working, I would not disclose unless absolutely necessary for accommodation.

After my divorce I developed a mantra that my MS is a disease for one and I walk the path alone. If I need help...I buy it...I never ask for favors or assistance from anyone.

I have been asked on several occasions to speak about the disease at events. I don't do that anymore...because I don't think it is educating anyone.

[1936siols]

Kastie

Katie I think your road has to be a very lonely one. Especially when your own mother feels the way yours does. I have a large family. I have never asked any of them for help but I know they are all concerned and they check up on me any time they talk to other members of the family. It is somethin g we laugh and joke about. I know that all of them care.

[tl-tr3]

Only my family knows ....

at this point. I won't disclose at work because I want to keep my job with insurance for as long as I can.

I don't tell anyone else about my situation.
I prefer my health status not to be a topic of conversation.

[Cat Mom]

If I'm using my cane, inevitably someone will ask "what I did to my leg". It's usually strangers. I used to say MS but got sick of explaining what it is. I'm one of those who "doesn't look sick".

I have fun with my answers, even told a taxi driver I injured myself in the Olympic trials... and he believed me!

Jen

[Jules A]

After my divorce I developed a mantra that my MS is a disease for one and I walk the path alone. If I need help...I buy it...I never ask for favors or assistance from anyone.
.

I agree. It is a disease for one. I have and plan to continue to walk this path alone. People who don't have it don't get it and I for one don't expect them to try. Plus no one wants to hear the whining, even if it is justified and they are foolish enough to ask how we feel.

Like you I'm preparing for my unpredictable future by making sure I am financially able to pay for the care I might need. It is what it is.

[Tawanda]

I wish I would have never told my parents...my Mother is ashamed of my MS and has forbidden me to tell any of the family. I actually live about an hour away from everyone so they can not see me in a flare and I avoid all contact with family members, even during Holidays. In fact, I think I just don't like my family.

I have not told the kids. My Mothers wrath is very harsh. When she dies, this will change...they have a right to know.

Everyone of my friends and neighbors knows I have MS, to include one cousin who lives down the street from me. They are all very supportive and protective of me, but I do not let them get too involved.

If I was working, I would not disclose unless absolutely necessary for accommodation.

After my divorce I developed a mantra that my MS is a disease for one and I walk the path alone. If I need help...I buy it...I never ask for favors or assistance from anyone.

I have been asked on several occasions to speak about the disease at events. I don't do that anymore...because I don't think it is educating anyone.

(((Katie)))
I just read this and your ither post concerning your Mom and the mountain. You turned out so wonderful, so at least something went right in your upbringing.

Maybe you don't require any handholding (I get that at MSW and that is enough for me), but you deserve some respect at the very least. I don't like to judge. I do not know your Mom or what her path has been but brrrr....she sounds cold!

[misslux]

If I'm using my cane, inevitably someone will ask "what I did to my leg". It's usually strangers. I used to say MS but got sick of explaining what it is. I'm one of those who "doesn't look sick".

I have fun with my answers, even told a taxi driver I injured myself in the Olympic trials... and he believed me!

Jen

Isn't it amazing how nosey strangers are? I don't "look sick" either and I look really young so I think that's why people think it is okay to ask!

[rdmc]

At first I didn't tell anyone but my husband and selected family members. I didn't tell my folks for quite awhile and I never told my Inlaws, even though my MIL lived with us the last couple years of her life. My diagnostic process was long, so everyone knew and could see I had issues, but once I was diagnosed, I just went on saying I had a "bum" leg, etc.
And didn't tell a lot of folks they had slapped an MS label on my neuro problems

In recent years, especially since my speech is somewhat affected, I've been more inclined to just explain an awkward situation by just saying "I have MS"...then moving on with the conversation.

Everybody at work knows, partly because I get to work from home, also I have other family members at my company and it's just not a big deal. The running joke is I get to work from home because then I don't ever have to answer phones, because I sound like I've been drinking on the job. also others in the company have chronic health issues, so I'm not the only "sicky" there.

The older I get and the longer I've had the disease the less I weigh who I will and won't tell...if the circumstances or conversation naturally lead toward disclosing, I do. It's not like before when I was determined not to tell. The caveat being as I've gotten older my circle of friends, acquaintances and contact with people is less than it once was so maybe that's why it seems easier.

[KatieAgain]

(((Katie)))
I just read this and your ither post concerning your Mom and the mountain. You turned out so wonderful, so at least something went right in your upbringing.

Maybe you don't require any handholding (I get that at MSW and that is enough for me), but you deserve some respect at the very least. I don't like to judge. I do not know your Mom or what her path has been but brrrr....she sounds cold!

She is cold. She let us know very early on she did not want kids. She does have some good moments...but they are rare.

Those early years were exceptionally tough, but they molded both my sister and I into the people we became. We did not allow our Mother to dictate who we would become even though we were so scared of her. We became very independent and successful in our respective fields in spite of her.

I just take the high road with her so I can live a life without regrets.

You can't pick your family. But thankfully for my Sister and I we chose the right path...on our own.

And thank-you for your kind words and hugs.

[ldruce]

Telling People

I tell everyone - friends, family, clients, strangers, etc. I find it defuses any possible situation. When they see how comfortable I am with it, then they are too. They will even offer to help, by opening a door, clearing a path, carrying something. If I can do it myself, I always choose that, but if I need the help, I thank them graciously with a smile and just continue the conversation. I walk with a cane.