Thursday, May 9, 2013

“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 Wendy Booker, 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.

 

23 comments:

Anonymous said...

Granted, people who are not or never have faced a life threatening or chronic debilitating disease likely do not have a clue how to discuss it with a person who does. I've been the healthy person in that situation a number of times in my life and I admit, I DID NOT HAVE AN EFFING CLUE.

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?

Dave Bexfield said...

I didn't have a damn clue, either, until I got MS. I've had to apologize to friends since then (um, I was an idiot), and now better understand those who don't know what to say.

Anonymous said...

Yeah, having been diagnosed with MS has helped me understand but now I find I don't have a clue, particularly with closer friends, how to discuss it with them. I tend to just not want to discuss it at all but I don't think that satisfies my friends.

Ron Crooker said...

Dave, I have PPMS and cancer, metastasized stage 3, and I tell my friends that the cancer is not a problem and I believe that I can beat it, and from my last report it appears that I may be doing just that. Anyway the original site of the cancer is gone so I have already beat it once and at that time I did not even know I had it. So the odds are with me on beating cancer once again. Now on the other hand the PPMS is what I worry about and what affects me from day to day. Through my diet I am holding my own and maybe even gaining a bit but attitude is everything, MS is BS.

Anonymous said...

Ahhhh well it's complicated. Like asking, 'Would you rather lose your left or right eye?' When something happens to YOU, it seems like the end of the world - whether you have a sprained ankle, MS or cancer

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

Dave Bexfield said...

Ron, you've got the double whammy I see. Sounds like your brain is screwed on properly and the attitude gene is not suppressed. Keep it up! And anon, that's happened to me too. I never get upset if my MRI these days is delayed because often it is due to a scared kid with something pretty damn serious.

Niko said...

It's all about perspective :) I listen to my friends whine about things that I feel, in the grand scheme of things, are insignificant. But then it's unfair of me to whine when my issues may seem less serious compared to someone else's issues. Comparing myself to others can trick me into perceiving things in a way that is overblown or undermined. I often need to refocus on myself and be okay with myself in relation to my own life. Then it's not as bad as I thought.

life well Lived said...

Many moons ago, there was a message board on the web page for the book Strong at the Broken Places. We constantly talked about the different perspectives people have depending on whether they reside in Sickville or Wellville.

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?

Dave Bexfield said...

The longer I have MS, the less likely it is that I run in my dreams. But sometimes I forget my forearm crutches and just walk normally, without a care, and then I panic because I don't have them and must have left them somewhere.

Tamara Sellman said...

Many kinds of cancer require a surgery to remove the disease and following chemo etc. and then these people are survivors and go on to lead healthy lives. With MS there is no surgery and the meds are a crapshoot. I agree, I don't like the comparison at all because it's apples to oranges. I know tons of cancer survivors but I also know people who struggle to live with MS and are stronger people for it. The comparison is simply unfair and minimalizes what could be a horrible lifelong illness for many. I'd rather just have "that sucks, I'm so sorry" any day!

Anonymous said...

My favorite comment has to be one from my MOTHER. :-) She has an autoimmune disease of her own (polymyalgia rheumatica) that's well controlled with a low dose of Prednisone and a lower stress life. There was a lot of "poor me" in the beginning and I let it play itself out since she needed to though that stage. Fast forward 10 years to present day, about four days after getting a confirmed diagnosis that I definitely have MS, we were talking about it and the changes it will entail, and she came out with, "Well now, it's very important that you not let yourself be down about this. I mean, it's definitely a challenge, but it could be worse - you could be Christopher Reeve." Ummmm...REALLY?! Since then, there has been periodic rhapsodizing about having a "Christopher Reeve moment" where, apparently, the lightbulb goes on and I'm supposed to realize just how incredibly lucky I am. Sometimes you just have to laugh and let it slide. Don't get me wrong, I do consider myself incredibly lucky...for my family, for my friends, for the husband ever, but that comment still just amazes me.

Dave Bexfield said...

Anon, you gotta love Moms. And I agree with you Tamara, just leave it with "that sucks" and skip the comparisons.

firefly said...

Bah, I beat MS today, and I'll beat it again tomorrow.

/11k vertical feet in the last 4 days.

Duncan Booth said...

They have talked of a cure for years, is it really any closer. I think the pharm companies make too much cash from dmds, to bother with a cure.
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

Milliepede Loftus said...

I was just diagnosed in February 2013. I have my first appt. with an MS specialist in August. (I fired the doc who ordered the lumbar puncture after he 1. Dismissed my month-long bout of constipation as nothing to do with MS, even though that had never happened before, and 2. He wrote a Rx for yet a different drug because I didn't fill the first Rx (because he left me to do the research on it - wow! There's a lot of scary stories about side effects out there!) the 2nd Rx needed monthly blood work - my follow-up appt. was set for three months. Adios, 'doc.'

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.

Dave Bexfield said...

Milliepede Loftus, we've all been there. I accidentally got served a diet Coke (I asked for regular) at an Appleby's 14 years ago and that is no doubt what triggered me getting diagnosed with MS in 2006. And I didn't even get a free refill! Bastards.

Anonymous said...

Interesting comments, and I can relate to a lot of them. I happen to have MS, three kinds of cancer, and a multitude of other diseases including tuberculosis (active). I am also allergic to very nearly every kind of medication and food (celiac disease), not as easy to manage as they say. Cancer can be a lifelong, painful struggle, as opposed to something you can just "get over" or "survive". I have that type, and will take daily medication (with unpleasant side effects) for the rest of my life. Dissing or trying to minimize anyone's disabilities or illnesses is unacceptable. We all have some kind of struggle and have to do the best we can. I live with the knowledge that none of my illnesses can really be treated because I cannot take the medication. I also don't have a family (they all died of cancer already), and my friends get depressed from seeing me suffer. So I take care of myself as best I can, eating vegan, doing yoga and tai chi/qigong as I am able, and I also dream I can walk like a normal person. I will not give up no matter what, and even if you only have one person who cares (even if they don't understand) it can change your life. Please don't assume that because someone has a different disease that it's "better". Also, people say I look "great" all the time, and it's very irritating because they have no idea. But I at least have that going for me!

Karen Loftus said...

Thanks, Dave, I appreciate your humour (well, we have to laugh, don't we?) some of your vernacular sounds British (?)

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.

Dave Bexfield said...

Karen, you are right--my humor (or humour) can be a bit cheeky. And Anon, I like the attitude!

Lilly Baker said...

I was double whammied as well & have been searching for others like me. After the intense chemos I was on that were only 60% effective, I had a bilateral mastectomy. My MS is brain & spine & has been a nuisance since the body change last year. I went to so many "ologists" last year because chemo poisons caused gastro damage which luckily helped me avoid colon cancer, but all has been a domino effect. I still believe I remain to be one of the strongest people I know, but when I just give in to my body screaming at me & don't get a dang thing done, my mind comes unglued. Although, the anonymous story of cancer & MS made me feel less like an alien. Thanks.

Dave Bexfield said...

Mind + Ungluing is never a good thing, Lilly, but it sounds like you have a handle on it despite all you've been through.

Anonymous said...

I have bad pain as one of my MS symptoms and require Fentanyl plus break-through pain medication. I see the advertisements in MS literature of people running, swimming, biking, etc. Why don't I hear about MS pain and why don't I see people in bed going nuts because their legs have not stopped jumping for five hours. Their ads tell me that I can be an Olympian if I read their mags or take their meds. Is this me wallowing in my own self-pity? Does anyone else have similar feelings?
Thanks, George

Dave Bexfield said...

George, you are preaching to the choir. I've even called out these silly drug company ads in meetings with their marketing folks. Will anything change? Your guess is as good as mine.