When and who did you tell about your diagnosis?

[JodieBee]

I was diagnosed with MS this week. I'm doing okay (this was a long time coming). One question I have for those who've been on this path for a while, is who did you tell and when?

I am a very open person, so my gut is to just put it out there. But since this is something I can't "un-tell," I'm waiting a bit to see how I feel. My immediate family and close friends know, as well as my work (I work at a doctor's office).

Did you keep your diagnosis to yourself? Or tell all? Or somewhere in between?

[22cyclist]

I worked in a hospital so I didn't tell them right away. I told my immediate family and some close friends.

Good luck
Lisa

[MSW1963]

JodieBee, since 'this was a long time coming' you may already have an idea of those you should not tell.

MS can cause confusion for those we know, and doesn't always bring out the best in people. For instance there's often a bit of good ole' 'you look too good', a heaping serving of 'I have that too', and 'my friend with MS uses xxx, exercies xxx and is normal'.

My first advice is usually to never disclose to an employer, but you know your workplace better than anyone here.

Based on my experience, proceed with caution when it comes to disclosing your MS dx.

Good luck and welcome.

[onlyairfare]

I told my husband. My primary doc, my ophthalmologist, and my neuro-ophthalmologist (who made the dx) knew my diagnosis. Period. Stop. End of discussion. This was 1975.

Over the years I have told very few people: a few close friends, a cousin or two, my aunt, my new PCP when I moved to a new state.

I still never volunteer the information, but since I "look so good" 40 years later, and am very secure in my career, I don't worry so much if my diagnosis is mentioned.

[kelm10]

blabber mouth

I am a blabber mouth. So, I tell almost anyone. I don't talk about it with every breath. I take advantage of educational opportunities as they come. But, that is me.

Having caution with employer is a good idea, but, you were like me. I work in the healthcare field, you just can not say it is nothing when you are going through all the testing.

[Mamabug]

I told friends and family right away. My first two major relapses occurred right at the beginning of my MS, within the first three months, and included ER visits and hospitalizations.

They occurred within the first three months, yet it still took almost two years to be dx. And, residual symptoms occured right through that time. So, it was a relief to all of us to finally know what was causing it.

I told my employer fairly early on. I expected, correctly, that I would need to miss a significant amount of work (more than my two weeks of sick days; had to use FMLA every year). So, I believed that it was important for them to know.

[AriD]

I told my immediate family right away. Soon after I told my work. I'm an RN and my initial symptoms included some leg weakness and imbalance. This caused me to walk like I had been drinking so it was pretty hard to hide things. My coworkers were great and ready to help me out when I needed it. I have never regretted telling anyone. So far anyway.

[Waydwnsouth1]

This is a fairly old thread so I thought I would reply to move it up for those newly dx that may be wondering the same thing.

I didn't go through great pains to hide it. I told my employer right away because I knew it would start causing me to miss work, and it has. Everyone at work has been very supportive. I told my immediately family and my friends. I don't hide it and as one poster said I don't miss an educational opportunity when it presents itself.

You have to trust your instincts. Best of luck!!

[Mamabug]

Jodie --

What are you deciding to do? What works for you?

[DonnaD]

Dx in 1986 right before I got married so only told immediate family (his too). It seems my boss found out cause the insurance company sent her reports cause my health insurance was through work (is that legal?). People didn't have internet then so there was no place for people to look it up. So I hated for people to hear the name of what I had since they really thought it was a death sentence. For 7 years I thought no one else knew (a few people knew but they didn't tell me). I limped a little if I was tired so I basically kept it a secret. Then after 7 years I had a big flare-up. I was in the hospital on steroids for a week. I really thought I'd never recover and I guess everyone else thought so too. I wasn't under a doctor's care regularly. For 7 years I really had thought the MS would go away

Now I walk pretty poorly (among other problems) and most people know but I really hate when someone innocently asks - Oh, what happened to your leg? Why are you limping? I know they're expecting to hear that I tripped over some stupid thing and sprained my ankle. I really don't like to shock them with Oh, I have MS. Too much information for casual acquaintances. Sometimes I just say - I always limp a little when I'm tired. Then they can ask someone else about me without all that uncomfortableness.

Did anyone see that Seinfeld where George hurt his leg. So he limped into work and discovered that an injury is just a story (usually funny) while a disability is a... (forgot what word he used there). Suddenly the whole company was his best friend. The boss gave him a private office with a private bathroom. The boss bought him a scooter... So I don't want to be that disabled person when people are just looking for a story that they can relate to (everyone trips sometime in life).

OTOH, people think I'm just a SAHM cause I'm too lazy or spoiled to go to work too.