Selma Blair

[Mamabug]

And people believe everything they read online. No one is going to take the time to research more than what is shown. I even thought that 100% of people with this disease ended up bed ridden invalids within a few years.

Correction:
Daisycat might believe everything she reads online. Daisycat might not take the time to research. Not all people do that.

My approach and attitude were totally different. We're not all the same.

[SNOOPY]

Singer Avril Lavigne also has MS.

Avril Lavigne has Lyme's Disease, I have never heard she has MS.

Where did you hear/read she has MS?

[swpanther1]

Singer Avril Lavigne also has MS.

[Daisycat]

It is because media writes mostly about the worst case scenarios, just google "ms patient" and see what kind of pictures come up

And people believe everything they read online. No one is going to take the time to research more than what is shown. I even thought that 100% of people with this disease ended up bed ridden invalids within a few years. This isn't a widely known disease so all you hear about is worst case scenarios (usually) so people assume it is always that way.

As for disclosing I will never tell anyone else I work with about this. No one needs to know. If it gets to the point to where it is causing me to make mistakes at work it is time for me to go on LTD anyway and no one needs to know the reason.

[dm0329]

My two cents. . .

With DMT's now available altering the typical course of MS and with changes in employment law (ADA, etc.), times have changed with "living in one's truth" and #LivingBoldly. Yet, I agree, it can still be problematic to disclose.

Although now on SSDI and "medically retired" for a few years now (mid-50's still on Avonex 21 years now ), I recall hearing folks saying that I would "bankrupt them with my medication", and even staying that "I was protected by the ADA" when overhearing first line supervisor's comments about me with certain co-workers.

Even after having a definite MS dx for 25+ years and taking Avonex for 21+ years, my brother still "thinks I'm lazy" and certain friends "just don't see it" because I still "look so good." Thankfully, I have maintained tx for a long time, and although my MRI's have been stable, I have had slow progression. My fatigue and cognitive issues are what nudged me out of the workforce.

Public awareness for MS is a good thing, but I've found disclosure to be a "wait and see" approach to determine "what's best" on a "need-to-know basis" because once it's disclosed, you can never undisclosed.

[Medina89]

She made it clear that she is going through an exasperation and she also made it clear that the disease relapses and remits. If people are ignorant about this after reading her story, so be it. They’d be ignorant if they didn’t read it anyway.
Speaking of ignorance, just over two years ago I legit thought everyone with MS ended up with a contorted body and bedridden. I knew all about the pathology of the disease but I didn’t know there was so much variation in the symptoms. (I’d only read about it in my terminology and pathology books and heard tidbits about my grandmother as I’d never met her)

This was before some of the newer celebrities had come out so I only had the worst case scenario, end stage, malignant idea of it. It’s exactly why I pitied anyone who had it and didn’t realize I had it until my sister pointed it out!
I’m very open about having MS and never hid that I was being tested for it. As soon as people I don’t see very often hear I have MS, they immediately think I’m in really bad shape and go into “If there’s anything I can do...” mode. I’m like, “I really need my dishes done. But I’m not incapable. I’m just lazy.” Then I laugh and get to explain it over and over again. I’m all about changing peoples misconceptions.

It is because media writes mostly about the worst case scenarios, just google "ms patient" and see what kind of pictures come up

[Daisycat]

I would be all for celebrities bringing awareness to this disease if people weren’t so ignorant. Before last September I would have had no idea what a flare was. I would have probably assumed what she was describing was how she was all the time.

Sadly a lot of people think they know what something is and they are stubborn and aren’t going to see things any other way or care to listen.



And I think that main reason I have only told my PM is fear of getting laid off. If anything goes wrong and it is viewed as my fault I am worried corporate would see me as a risk and make my PM let me go. Also I would hate to have everyone looking over my shoulder every second and making sure I am not messing up.



If nothing else this has made me determined to do my job 1000% better so they hopefully would view me as valuable and wouldn’t fire me if something was to come up. (And I even mean small things). I want to make sure that when someone looks at me and how I do my job they would never even think I have a disease. Of course its going to end up with me trying to take on too much and do too much but better than being fired and not having LTD when I need it.

[Badaimata]

for us regular people we can never be open about it like celebrities. We would be judged and secretly talked about behind our back about how we are "defective" and "disabled"

Soon after I was Dx'ed but before I disclosed it, I was sitting in an employee meeting listening to comments being made after a bout of layoffs had just been announced. One topic of discussion concerned another individual in the company who had MS and had openly disclosed his condition. Comments concerned how this individual had managed to avoid being laid off "I mean, he has MS for crying out loud !", as well as other unflattering things. Fact was the person with MS was undeniably more productive than any of the people I knew who had been laid off. That convinced me never to disclose except in cases of "need to know." I follow that to this day, 20 years later!

[Daisycat]

I read several different news stories about this. Some made it very clear that this wasn’t how she was all the time. Some were poorly written and didn’t really make much clear.

I hope this changes people’s minds , but I know people and people are lazy. They are going to skim the article and make assumptions.

[IntoDust]

It can do good when people say they have a disease, but until the majority of the public is willing to look past their pre conceived ideas about what a disease is, it worries me that for some people it will cause issues.

This is why it’s so important that celebrities bring awareness to the disease!
It’s also important for us, should we choose or care to do so, to take the opportunity to educate, educate, educate! If someone wants to learn, I will teach them. If they want to hold on to misconceived notions of the disease, that’s their prerogative. You can’t change the minds of the willfully ignorant but you can help expand those who’s minds are open.

[IntoDust]

Into dust
I do get what you are saying, but just because someone is made aware of a disease doesn’t always mean they will read and know the most reliable information. For me it makes me afraid that my PM will read about it and think I am a liability if I become like that.

Some people are going to read what she wrote and think that is how she is all the time every day. I get why she felt the need to tell people about this, but I also see the harm this can cause to some people. Some people are ignorant and are going to think what she said describes what she is like 24/7 and they aren’t going to bother to learn anything else.

She made it clear that she is going through an exasperation and she also made it clear that the disease relapses and remits. If people are ignorant about this after reading her story, so be it. They’d be ignorant if they didn’t read it anyway.
Speaking of ignorance, just over two years ago I legit thought everyone with MS ended up with a contorted body and bedridden. I knew all about the pathology of the disease but I didn’t know there was so much variation in the symptoms. (I’d only read about it in my terminology and pathology books and heard tidbits about my grandmother as I’d never met her)

This was before some of the newer celebrities had come out so I only had the worst case scenario, end stage, malignant idea of it. It’s exactly why I pitied anyone who had it and didn’t realize I had it until my sister pointed it out!
I’m very open about having MS and never hid that I was being tested for it. As soon as people I don’t see very often hear I have MS, they immediately think I’m in really bad shape and go into “If there’s anything I can do...” mode. I’m like, “I really need my dishes done. But I’m not incapable. I’m just lazy.” Then I laugh and get to explain it over and over again. I’m all about changing peoples misconceptions.

[Daisycat]

And I’ll be the first to admit 13 months ago I would have thought that how Selma described things was how she was every day.

I was ignorant about this disease and even when I heard celebrities like jack osburone talk about it, I still thought it was the “Michael J Fox” disease.

It can do good when people say they have a disease, but until the majority of the public is willing to look past their pre conceived ideas about what a disease is, it worries me that for some people it will cause issues.


And again I was one of those idiots 13 months ago..

[smalltowngirl]

I visited a new church today. The message was called “The Label Maker,” and it was about how we all carry around these labels that OTHER PEOPLE give us. Better yet— it was about how WE ACCEPT these labels from other people. However, there’s no need in it. Religious or not, the message was simple: it doesn’t matter what label others put on you as long as you know who you are. It spoke to me in a big way, and now I feel the need to just put this out here.

With that said, there are some derogatory terms being thrown around and I think sometimes it’s hard to distinguish between “my” disease and “your” disease, and often this just becomes “OUR disease.”

As Phil Dunphy sang on Modern Family, “We’re all in this together!” (Haha!) And while I don’t believe we would ever call one another “defective,” sometimes that’s how it feels when you refer to yourself this way, Daisycat. We know it isn’t true. I know it’s a label you’re carrying around but I do hope one day you will see that it isn’t a respectful one and doesn’t come from a place of love.

Just my two cents,
smalltowngirl

[Daisycat]

Into dust
I do get what you are saying, but just because someone is made aware of a disease doesn’t always mean they will read and know the most reliable information. For me it makes me afraid that my PM will read about it and think I am a liability if I become like that.

Some people are going to read what she wrote and think that is how she is all the time every day. I get why she felt the need to tell people about this, but I also see the harm this can cause to some people. Some people are ignorant and are going to think what she said describes what she is like 24/7 and they aren’t going to bother to learn anything else.

[Seasha]

Well said, Intodust and I agree!