“At least you don’t have cancer”
People say
lots of silly things when they hear you have multiple sclerosis. “It could be
worse… you could have Lou Gehrig’s disease.” Um, okay, I suppose MS usually
doesn’t quite rank up there with ALS in terms of nasty neurological diseases.
Wow, I feel so lucky. Maybe today I should play the lottery, too. “I know someone
who has MS and she just climbed the Seven Summits.” Her name is Lori Schneider (correction: I previously mentioned Wendy Booker, another climber who climbed but didn't summit Everest), she’s not your normal MSer, and I’m pretty sure I’m not seeing the summit of
Everest unless it’s in an IMAX theater. (Okay, technically I did see the
summit… from an airplane flying from Bangladesh to Bhutan a few years ago, but
seriously.) “I have a couple friends with MS, Stacey and Madison. And Madison
is doing great!” I know this may come as a shock, but even with MS I still have
the powers of deductive reasoning. What the hell happened to Stacey? Wait,
don’t tell me. “My aunt had MS… she died.” Oh, my favorite. I know someone
who had MS. Thanks for sharing.People mean well, they do (and I’m sure most are clueless as to what to say), but there has always been one comment that, at least until recently, had grated on me more than most. “At least you don’t have cancer.” When I was diagnosed I would have disagreed with that statement, indeed argued. Unlike with MS, with cancer you have a chance to beat it. I have a few friends my age who have beaten it, even from the depths of Stage IV, and are living pretty darn normal lives. But I also know those who have lost that fight far too young. It’s devastating. Permanent. Those individuals almost certainly would have chosen our fate. Trust me, you don’t want cancer. At least with multiple sclerosis, there is ongoing cutting-edge research that could change the face of this disease. And unlike cancer sufferers, time is on our side. One day we’ll beat this. Yeah, I said it. We’ll beat this. Until then, when I tell people I have MS, I personally prefer hearing the simple “That sucks, sorry.” Yes, it does. For now, that is.
Originally posted November 30, 2010. Updated April 3, 2018.
Comments
So, how does one with a condition like that tell their friends, coworkers, acquaintances, just how they would like it discussed? Or do they want to discuss it at all?
I remember when I was going on for perhaps my sixth MRI I was irritated - they had poked me in several places to get the dye in right, and I knew it was going to be cold and noisy in the MRI machine. I was doing the, 'Why is this happening to me' thinking... when I saw a 1 or 2 year old going in to another MRI machine, she had to be intubated and her visibly harried parents were carrying her. And I immediately felt stupid and ashamed at my whining..
Speaking at strange responses about the MS, I've had a lot of 'but you look fine!' responses,I don't mind them... I recently met an old college mate who sounded almost disappointed that I looked fine! We had spoken over the phone and she was full of sympathy.. until she actually saw me! She never called me again!
I
Over the years, it has come to seem more like Plato's Allegory of the Cave, where a group of people have lived their entire lives in a cave seeing only shadows. One of them is released and goes out to see the world, the fire, and the people casting the shadows. When he returns, how is he to describe the world to a bunch of people whose frame of reference includes nothing with which to compare the world? Often, sickville and wellville are as different as the cave and outside. Neither population can really share their experiences in a relate able way if the other has never known living abroad (so to speak). The worst part is the longer I've had MS, the harder it is to remember what life was like.
What's a day without nerve pain?
/11k vertical feet in the last 4 days.
I raise money for ms research, what do you reckon a cure will look like?
Remyelination will not get rid of symptoms. I want a cure to send me back to how I was, this is not likely is it, to repair damage done is not gonna happen.have a look at dunc10in10blogspot.com
Cheers
Dunc
Anyway, I was telling only those at work who work with me - so they didn't think I was only drunk and disorderly at work... Imagine my surprise when I learned from no less than three people that if I drank diet pop, this is what gave me MS! And my colleague KNEW people who had been diagnosed with MS but once they stopped drinking diet pop, they don't have MS anymore. Alleluia! That simple. It was my own fault all along.
Still, I looked it up. It's one the biggest hoaxes out there and you can even fill in the blank with the disease, "Aspartame proven to cause xxxx." The MS Society and other organizations in the know say there is no evidence.
This one of the worst comments that's been made to me -by loving, caring, people no less. I just don't tell anyone any more.
Anon, thank you for your insight. You're right, it isn't a case of what disease is 'better,' or worse. We just deal with what we have. I'm very blessed with a supportive husband and family and try to remember that always. Blessings to you.
Thanks, George