brokenclay.org/journal

Phrases I don’t ever need to hear/read again:

  • But you look so good!
  • I have MS, but it doesn’t have me!
  • I’m gonna beat this thing!
  • You either give in…or fight it. I’m gonna fight it!
  • It’s all in the attitude.
  • Don’t you worry—a cure is around the corner…look how far they’ve come with cancer.
  • You’re still walking though, aren’t you?
  • It could be worse, you could be one of Jerry’s kids.
  • They have a cure for that now, right?
  • I have a friend, who has a mother, who has a son, who has a daughter, who has a dog, who has MS…
  • You don’t look sick.
  • Never eat/drink (fill in the blank) because it causes MS.
  • Bless your heart—God doesn’t give us more than we can handle.
  • If you would only exercise more…
  • At least it’s not (fill in the blank).
  • You’re doing so much better! New medication?
  • You’re not doing so well! Is it the stress?

Shamelessly stolen from a thread on an MS support board that prefers to remain anonymous.

Katja

20 Comments

  1. Jeannette Randall

    “You’re so brave. I would’ve killed myself.”

    “Isn’t using a wheelchair for this a bit extreme?”

    Definately need some cans of whoop-arse. :)

    Reply
  2. denise

    “You don’t have children….do you??”

    And from the more timid:

    “So (long pause)….how did you…um…you know….get it??”

    The paternalistic:

    “You don’t live alone do you??”

    From the ‘I’ll-cheer-you-up-even when your not down-person’:

    “Ah heck! You’ll be okay! Just don’t think about it–that’s all!! (laughter, pat’s you on the head)”

    Reply
  3. denise

    That’s “pats” not “pat’s”

    We can probably come up with 100 more if we really stopped to think about it. They sure get old fast, don’t they?

    We forgot about those who do this number:

    “ARE….YOU…..O..KAYYY?”

    Reply
  4. Kim

    Brillant, and I couldn’t agree more with all of them! Thanks for posting. :)

    Reply
  5. Doug Lee-Knowles

    “Never eat/drink (fill in the blank)” is my favorite. Until I pleaded for a truce, a family member used to email me crap about how MS was cased by Aspartame, saturated fat, wheat gluten, refined sugar, etc.

    May I suggest another phrase for the list? “You should eat/drink (fill in the blank)”. Some people really think it’s as simple as that.

    Reply
  6. Rayna

    “You’re always so cheerful/positive.” This even when I’ve never said a cheerful or positive thing around the person – in fact deliberately go for the opposite out of bloody-mindedness. I swear they would say this even when I’m strangling the life out of them…

    I’m glad I’m not the only one who gets the – you’re so brave, if I was like you I’d kill myself – crap. Used to get this one a lot in my late teens (who the hell says this to an *adolescent*??!!), when I was actively suicidal. Not because of my CP, but because I couldn’t bear the crap I got from the rest of the world because of it.

    Reply
  7. mdmhvonpa

    LOL! You know, after hearing boat-loads of this tripe I’ve given up on telling people that I have MS. When they ask I just tell them that I got a slow-acting, highly contageous form of polio while practing devil worship in Hati during a blood drinking ritual. The questions stop a predictably short time.

    Reply
  8. Erik

    See you’ve got it all wrong. You need to combine Glyconutrients and LDN to he healed! ;-)

    The winner for me is usually:
    “ARE….YOU…..O..KAYYY?”

    Reply
  9. camille

    I had a co-worker tell me if she had the diagnoses of ms like me, she would of left this job a long time ago…..Unfortunatly i wanted to work forever but my last exacerbation put me on temporary disability. i am still out, but i dream of working……

    Reply
  10. Michelle

    You forgot “I’m so sorry”. Seriously, they are sorry for what??? I didn’t say I was growing a horn from my head that’s purple, I said “I HAD MS”.

    Reply
  11. Tapetum

    My personal favorite – probably because it’s the one that impacts me as an aide. “What does she need?” by store personelle, to me, while my client is sitting right there. Sometimes they will persist even after I wave them over to her. Glah.

    Reply
  12. Katja (Post author)

    I had a co-worker tell me if she had the diagnoses of ms like me, she would of left this job a long time ago

    I had a co-worker who said, “If I had what you have, I would quit my job and spend all my time looking for a cure.”

    Frankly, I enjoy working at what I do, and there are lots of people out there looking for a cure. As I have no particular desire to retrain as a neurologist or molecular biologist, or whatever, I think I’ll delegate that work to them.

    Reply
  13. D Bunny

    I can’t believe some of the comments that your commenters have heard in real life. Ugh, I just want to slap some people.

    I have not said “I’m so sorry” to anyone, but I’ve wanted to. Sorry if that’s wrong, but I am sorry that anyone has to deal with MS. I know now that someone will get offended by it, so I’ll make sure I’ll never say it. But in my heart, I really am sorry to hear of anyone dealing with it, or facing the fear that comes with a new diagnosis.

    Reply
  14. Katja (Post author)

    I appreciate hearing “I’m so sorry”. I am sorry I have MS, I’m sorry anybody has MS.

    Reply
  15. Andrea

    “For having MS, you’re doing great!” or “I can’t believe you were able to do that with MS.” Implying, of course, that I’m only special because I have MS. If I accomplished something before the MS, it was just cool that I accomplished it. Now my identity, talents and personality are forever married to a disease? Pitiful.

    Great list. Loved it. And lived it!

    Reply
  16. Katja (Post author)

    Hey, Andrea, good to see you here!

    Reply
  17. Adam F

    Love the list! It’s sad but true, I’ve heard almost every one of these.

    Reply
  18. Eliza

    Well, duh, Katja: you don’t need to retrain as a molecular biologist; you just need to work at GNC. ‘Cause taking the right vitamins will make you better, doncha know. A related fave: “I have this great naturopath/chiropractor/hypnotist/horse whisperer who I KNOW.”

    (These others are all so true, too, of course. Another fave of mine is, “So how long will it take for you to get better?”)

    Reply
  19. piny

    My aunt died of MS last year. Like everyone else in our family, she was never an easy woman to get along with. She was also not happy about spending every day in a tiny room with nothing but her DVD collection to keep her company.

    She told us about a nurse, a tiny little woman “looked like a quail” who was shocked, shocked! at my aunt’s bad attitude: “I don’t understand where all this RAGE is coming from! Can’t you just be happy?!”

    Reply
  20. Katja (Post author)

    I’ve been contemplating rage a lot lately. I think the yearly MDA telethon dustup has stirred it up a lot.

    Reply

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