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Old 10-13-2011, 11:00 AM   #1
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How do you answer silly questions?

I was asked a silly question about my Fibromyalgia & was left almost speechless.

" Why is it that your fibro seems to make you hurt all the time & you don't want to do things like go shopping or out & about when I want to go? I know others with fibro & they do more than you do"

My answer that didn't get rave reviews, " Because fibro effects people differently, & over time it seems to get worse, Yes, I am in pain 24/7.
I have been fighting Fibro for going on 18 years and I think I do pretty good for myself.I travel & enjoy live as much as possible. I also have CFS & that really slows me down. I don't feel in necessary to go out & about just to go out.I am not interested in shopping, I have never been a "shopping girl" I love my home & am happy to just hang out here"

Does that seem snarky? I feel I am being very honest..
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Old 10-13-2011, 11:35 AM   #2
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I think you're right-- just answer simply and honestly. Personally, I think it was a pretty selfish question! Even a "simple" headache affects each person differently. I don't mind any questions that come from a real desire to help me or to understand my limitations. But basically complaining about how you deal with your condition because it affects her desire to go shopping??
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Old 10-13-2011, 12:30 PM   #3
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Not snarky at all, just the facts Jack! My DS is autistic and I've heard "But he LOOKS normal" "But he seems so happy" Really?
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Old 10-13-2011, 12:39 PM   #4
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I always tempered my responses to rude questions by who was asking. It was common for people to ask "What happened? Was she in an accident?" about DD Samantha when she was younger (yes, it was an accident, no it didn't involve a car, and she was 6). Usually I just said "Oh, we just figured being hundreds of thousands of dollars in debt and living in hospitals for a few years sounded like fun!!"
One time, I told a little boy who asked "She got hurt because she wasn't being nice to her mother and didn't behave herself." (This was in a restaurant where the little boy had terrorized everyone for the last hour, had spit in his mother's face, and screamed curse words, all while "mom" was wishy-washy and sicky-sweet "Billy, please don't do that. Sweety, it just breaks mommy's heart when you say those words to me. Please stop."

I think, for you, for most people who don't really know you well, a simple "Fibro affects different people differently. I'm just glad I got out of bed today." (I have a friend with Fibro and MS, and sometimes this is a huge challenge for her)

For close friends/family, saying "I'd love to go do stuff, but then I'll be in pain for DAYS after and unable to even get out of bed at a decent hour. How about we just enjoy a phone conversation, or a visit at my home?"
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Old 10-13-2011, 12:49 PM   #5
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The funny thing is, This is my sister who knows exactly how my fibro effects me, But STILL DOESN'T GET IT !!!!!!!!!!
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Old 10-13-2011, 01:04 PM   #6
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Since she is well aware of your condition, I'm not sure I could have been so nice.
Lots of times, when I am well, I don't want to shop. I don't know why if I was in pain as you are, I would want to shop at all.
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Old 10-14-2011, 11:14 PM   #7
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The funny thing is, This is my sister who knows exactly how my fibro effects me, But STILL DOESN'T GET IT !!!!!!!!!!

Well, that's just not right. If I had Fibro and my sister was like yours, I might tell her "I don't like you well enough to go out with you. Either that or MY FIBRO MAKES ME FEEL ILL AND I CAN'T GO WITH YOU! Take your pick, sis."
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Old 10-15-2011, 03:27 AM   #8
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I think rude questions come from people not understand things. I have a bad back from a damaged disc which is totally different from someone who gets muscle spasms. People do not understand that two people with the same illness or disorder may be living their life differently. The do not know your life so they ask.

I try not to be rude to people and educate them. To a person who sees a disabled child they think of a car accident not a child falling out of a high chair or a child who was born damaged by an inept doctor's forceps.

Today was a bad day even though Mom gets a better brand new bed. She could not understand how sick she made me. She saw me gasping for breath and spitting and wheezing. She had me wake up twice and come to her 4 times in half an hour. THEY DO NOT UNDERSTAND. I am nice to strangers because they can be educated but family do not get it.
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Old 10-15-2011, 09:08 AM   #9
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Originally Posted by Eeyore Tattoo View Post
I am not interested in shopping, I have never been a "shopping girl" I love my home & am happy to just hang out here"

..
OK, I'm confused. Who was the lively imposter running around, shopping, and being full of all kinds of mischief in Disneyland?????????? I don't want to alarm the real Deb but I have plenty of photos to proove that a lookalike was causing all kinds of mayhem in the parks.
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Old 10-15-2011, 09:10 AM   #10
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Well, that's just not right. If I had Fibro and my sister was like yours, I might tell her "I don't like you well enough to go out with you. Either that or MY FIBRO MAKES ME FEEL ILL AND I CAN'T GO WITH YOU! Take your pick, sis."
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Old 10-15-2011, 09:26 AM   #11
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I'll be honest it doesn't seem to me that the question comes from not understanding you disease as much as them feeling sorry for themselves because you don't spend time with. Your answer was honest and appropriate but it may go deeper.

I have multiple autoimmune issues and yes I do get silly questions. It's never fair to compare one persons fight with a disease to others. I want to say "I've seen healthy people who run marathons, how come your not?" but I keep my mouth shut.

The thing I do say is that I have limited energy sometimes and have to spend it wisely. If you had less money you wouldn't waste it on things you don't want, why do that with your time?

Are there things you can do together? Can you invite them over to watch a movie, or a cup of tea and a chat?
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Old 10-15-2011, 11:26 AM   #12
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OK, I'm confused. Who was the lively imposter running around, shopping, and being full of all kinds of mischief in Disneyland?????????? I don't want to alarm the real Deb but I have plenty of photos to proove that a lookalike was causing all kinds of mayhem in the parks.
LOL, The same girl that went back to the room everyday for a 2 hour nap so I could keep up with you 2 young ladies! (And took lots of pain meds)
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Old 10-15-2011, 02:06 PM   #13
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Had a chat with my sister & she said she understands, But it upsets her that Fibro is messing up my life & she wishes I could do more. She said she misses her sister, the one that was more active. I agree! I have made a appointment with a Rheumatology doctor that deals with Fibro to see if there is something else I can do to feel better.
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Old 10-15-2011, 07:35 PM   #14
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LOL, The same girl that went back to the room everyday for a 2 hour nap so I could keep up with you 2 young ladies! (And took lots of pain meds)
Yeah, you always crashed two hours before me. You were back in the parks when I went for my nap, but we were always back in synch to run around the parks in the evening.
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Old 10-15-2011, 07:38 PM   #15
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Had a chat with my sister & she said she understands, But it upsets her that Fibro is messing up my life & she wishes I could do more. She said she misses her sister, the one that was more active. I agree! I have made a appointment with a Rheumatology doctor that deals with Fibro to see if there is something else I can do to feel better.
That's great, but remember that you can only be who you are. There are some things beyond your control.
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