"At least you don't have cancer" and other odd things people say when you have MS

[ActiveMSers]

The topic of my latest blog is all about the silly things folks say when they hear you have MS, especially when you are just diagnosed. Sometimes people don't use their brains.

http://activemsers.blogspot.com/2013...ve-cancer.html

These are just my experiences. What about you guys? Include the good, the bad, and the "you've got to be kidding me."

[celia]

jacqueline du pre

Least favorite response: They tell me about Jacqueline du Pre, a famous cellist who had a very visible, quickly-advancing progressive form of the disease. I'm a working musician - piano, organ, choir direction - and so far the hand coordination is still ok, but getting down the choir loft steps can be dicey, and sometimes I need to ask someone else to read Latin lyrics to the choir.

My neurologist says the occasional tingling and cramps could be overuse - don't blame MS for everything - and it is counterproductive to wonder whether a little awkwardness early in the morning means "this is it." Winter is better, of course.

[KristaH]

Once people know I have MS they feel obligated to let me know that they know someone, are related to someone or heard about someone who has it. But in their knowing this person they are suddenly an expert and go into the whole "have you tried..." shpeal Umm no I haven't and I'm happy with the therapy I'm on thank you.
And when they say "I'm sorry" after hearing the news and get all awkward I just tell them "nothing to be sorry for, this is how it is and I'm getting by" It usually eases the awkwardness a little.

[donnaps]

stupid things people say

But your husband looks so good. Idiots. take a look at his MRI - that doesn't look so good

[ActiveMSers]

I've reposted in Blogger and updated the link. Also added a personal pic I took of the summit of Mt. Everest. Note, not AT the summit, but OF the summit. I'm adventurous, but not crazy!

http://activemsers.blogspot.com/2013...ve-cancer.html

[garyp]

"had an uncle with MS, he lived a long time"

These were the words a college friend said to me right after I disclosed my newly diagnosed condition. I was 30 years old and looking for encouraging words - and this sounded like a promising line of discussion. So, I then asked him (almost in a quick reaction mode rather than any kind of well thought through question) "how long did he live". He looked at his wife and said "late forties I think". I could have punched him. And this buy was a scientist with much exposure to the world of medicine.

[Marinadca]

My favorite (from a coworkers) "So, are you doing to die now?"

I got a few in that vein, "Is that going to kill you?" or "How long do you have left?"

Have not died yet...

[Guitar_grrrl]

There's always the "how are you" laced with an extra dose of melodrama...sheesh!

[ActiveMSers]

I love that one, Guitar_grrrl! Folks tend to talk as if you just got out of a four-month coma. Just give me a simple "'Sup?" If I want to talk about my disease, I will.

[HETA78]

Just had a new experience to add...

A co-worker, with whom I am not friends with came up to me and said "I know you've received a diagnosis already and started treatment, but, I think you should read this article. The guy who wrote it had a lot of the same symptoms as you."

The article's title was "It's All In Your Head" and it was about a gluten intolerance. These "symptoms" we had in common were vision loss and dizziness. Clearly not what I experienced. Plus I have zero digestive issues. AND I never talk about my MS candidly at work, only to the few people here who are genuinely curious or have family members with MS as well.

Thanks for insinuating that this disease which I have had to work very hard at coming to terms with is a misdiagnosis and is as easy as not eating wheat.