I just did a survey for Overcoming Multiple Sclerosis (dot-org). I was reminded that I completed this survey on holistic practices with MS in 2012 and that this is a follow up. While I don’t remember the 2012 survey ( I participate in surveys-#5 at least once a month) – It didn’t seem unusual that I did it and that I don’t remember it! (my memory fails me -#4 more than once a week) But they kept reminding me and every time I got the email- I thought … I’m too busy to do a survey: a lot of the time. It didn’t come with an incentive ( 1. an amazon gift card, 2. a donation to the charity of your choice) which would make the decision a no brainer. But it is a non-profit organization that is interested to know how I incorporate holistic practices into my day to day with MS. (more than twice a week). And okay… I am motivated by doing something that could help peeps like me who have MS. It’s a non-profit.org afterall. I’ve founded a non-profit org (once in the past 10 years)- I get it.
I participated in spite of the fact that I resent selecting numbers to describe my variable, unique version of MS (#5 depends on how i feel that day)* And I hate that by participating in surveys for the greater-good makes it glaringly obvious that I’m getting worse. Sometimes I feel offended by the questions. I’m always looking for that last option that reads #5- Stop asking me these questions or #6 None of your business. Those usually deteriorate into one word expletives by the time I get to question #104 and at that point I’m amusing myself with my real life responses which aren’t fit for any survey, but do reflect how I’m feeling. (depending on the day).
But today was a little different. I didn’t mind (as much) the labels or generalizations that I was forced to select.
It seems on some days I can find the “feel-good” in how I respond to the question “how often does pain interrupt your normal activity” (#5- rarely) and not so bad about the “how often do you rely on a cane or someone’s arm to feel stable.” (every day).
*My name is Amy and I’m a compulsive-(parenthetical)-hyphenating-italicizer!
MS~LOL: Multiple Sclerosis a Life Of Learning 
Everyone’s “version” of MS is unique and infinitely variable. Eastern medical world looks at YOU, Western medical world (when it’s not on a battlefield or doing things like heart transplants) sees the bell curve of the data they cherry-picked and everyone is the same. We who travel the MS Highway, we know we’re unique; we notice the changes every day, every moment even. People who write surveys have already decided what answer they want; choice of questions and how they’re written show you pretty quickly what they really want.
Another MSer asked me one day, when I told him that I was answering kinda unpleasantly dense survey questions, “What are they paying you?” This stuff usually, almost always, has nothing to do with “paying back the community;” if it’s all about Them, whoever They are, getting the answers they want at YOUR expense… don’t you have better things to do? Drink tea, look at the stars, forgive those with whom you have Issues, or make Them happy?
*Your* choice.
Reblogged this on MS SoftServe – on the cutting edge and commented:
How often do you read blogs about surveys? 1-never 2-some of the time, 3- most of the time and 4-always.
My response is more in the 3-4 range. 🙂
I rarely take part in surveys or opinion polls.
However, some years ago, I was approached and asked if I would participate in a mobility awareness survey.
I must have been going soft because I agreed. They would come to my house, ask questions, shoot video and drink coffee.
A lovely young German couple turned up and spent about an hour and a half just talking.
When they left, the young man handed me an envelope and thank me for my time and participation. – The envelope contained £200.
I’ll do those kind of surveys every day.