My multiple sclerosis has made me more suspicious

Why I doubt praise these days, and sometimes even studies that seem hopeful

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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As I’ve mentioned a time or two, my wife and I have three boys. Although they’re all under the age of 12, they’ve started to talk like the budding teenagers they are. As they mingle with peers more than their parents, their vocabulary in particular becomes less like ours every day. This shift includes their adoption and use of slang.

Thanks to my multiple sclerosis (MS), I’m retired and don’t mingle as I used to, so I’m a little lost when it comes to new slang. Plus, as my kids are kind enough to remind me occasionally, I’m old and lame. As a form of revenge, I learn one of their terms and then deliberately misuse it just to irritate them.

I’ll say something like, “Ah, the weather sure feels ‘sus’ today! I might need a jacket.” And then I’ll laugh at their indignation.

“Sus,” by the way, is one of their common terms and is short for suspicious. I’m sometimes accused of being “sus” during family card games or when the last cookie(s) has disappeared, and that’s OK. I use it as a teachable moment for the boys by admitting nothing, denying everything, and making counteraccusations.

Lately, though, as my disability has progressed, my suspicion of others seems to have increased with it, and I don’t like thinking people are “sus.”

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What I tend to doubt

I don’t want to suspect every compliment, praise, or motivational comment, but I do. About a month ago, I wrote about impostor syndrome, and I can attribute some of my suspicion to that, I suppose. Hero? Inspiration? I dropped my glasses three times this morning while trying to clean them, then said a really bad word and gave up. How heroic and inspiring was that?

I don’t think I was such a pessimist before MS, but now, I often catch myself questioning the motive behind probably harmless statements. What did the speakers mean by that? Are they trying to manipulate me? No, I really can’t do anything I put my mind to. If that was meant to motivate me, it’s not going to work.

I also tend to overexamine people’s statements for any trace of pity. I’ve always taken pride in my independence, and as it slips away, any hint of pity feels like an assault on what’s left. I know I need help sometimes. I know I can’t actually do everything by myself anymore. Help me, but please don’t pity me.

I like to follow multiple sclerosis research, but I read the studies with a certain amount of suspicion and skepticism. Some of that is from taking statistics and research data interpretation classes in college. Statistically significant results and patients’ real, felt improvements are often very different things. I have hope, but I’m still suspicious. Maybe that’s just self-protection.

With all that said, I actually feel a little guilty for being so suspicious. I know our societal norms make people feel obligated to say something when in close quarters with another person. I just sometimes wish that something could be “Nice weather we’re having” or “How about that World Series?”

I doubt those familiar icebreakers are any more or less sincere than “You’re such an inspiration,” but they certainly don’t feel as “sus.”


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Kim Reed avatar

Kim Reed

Yep, I completely understand and agree with you. I thought I was the only person who felt this way. I thought I was being paranoid and "sus" of people. Thank you for sharing your story. I now know that I'm not alone in my thinking.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

It's like being at a funeral and the umpteenth person says, "I'm sorry for your loss.".

I know they mean well. I know you’re supposed to say something and our upbringing has made that the default thing to say, but I stopped thinking it was sincere 10 people ago.

The worst part is I feel guilty for being skeptical because I know all that and might do the exact same if the roles were reversed.

Ben

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Lisa M avatar

Lisa M

Thank you. I'm not the only one. I find it difficult to trust others now. I have good reasons but I have to think that MS did play a part. I think that due to not getting out to socialize has allowed me to spend hours each day, wondering way too much. And sadly, some of my thoughts aren't how I used dto be. I do have reasons such as one of my best friends, unaware of her drug or alcohol addiction, attacked me with broken glass. I am lucky to be alive! Eighteen years later, after almost 3 decades of marriage, I took the dogs and moved out. I again, had to fight back to get any support. These are two people that I had once. trusted the most! I am very vocal until it comes to my personal being. I am not out to impress anyone. I only would like some empathy for the daily MS pain. I am happier living the simple life. People don't like me because no matter what I face, I am still happy driving around town in my 18 years old station wagon. I am. Why can't people allow others to be happy?

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you for that Lisa. No, you're not the only one.

In answer to your last question, some people get angry if you're not suffering the way they think you should.

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Mary Ellen Miller avatar

Mary Ellen Miller

At my 50th HS reunion, people came up to me saying “You look so good!” After 25+ years with MS, I am obese and can barely walk. I know what I look like and it’s not “good.” Somehow that really made me mad. Patronizing.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I wish I'd thought to use patronizing in the column! I sometimes want to ask, "Which one of us are you trying to make feel better? Because, if it's me, you're not very good at it.".

Ben

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Lori A Cree avatar

Lori A Cree

Have you been reading my mail? This is me totally.

Reply
Benjamin Hofmeister avatar

Benjamin Hofmeister

I haven't been, I promise. We just speak the same language. (Unfortunately)

Ben

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Mary Davis avatar

Mary Davis

I appreciate everything you say and feel the same way. I have a very hard time articulating my thoughts and your articles help a lot. Thank you.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Mary! I have a terrible time articulating thoughts too. If they were spoken instead of written, there'd be a lot of pauses, "uhs", and "you knows" in my columns.

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Nancy Nogg avatar

Nancy Nogg

Thanks. I resemble your your remarks. Working at home and then retired, I find it peopley out there. I go out because I know it’s heathy but it takes it out of me. People who are not authentic, employees who are inefficient, yada yada. I smile and attempt to keep growing.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment Nancy! What else can we do except smile and keep on keeping on? I don't want people to not interact with me and I really think most mean well. If that means the occasional forced smile for the non-authentic ones, I guess it's worth it.

Ben

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Karen Mott avatar

Karen Mott

How I wish this place would get someone who could truly express what they think. (cough cough) ;-)

OK, obligatory (faux? you be the judge Ben....I can take it) insults out of the way, I will say I'm jealous of your stats and data interpretation classes of yore. Both of those would have been much more useful to me now than the calc and differential equations that I took and then forgot. As it is, I'm sus of almost all studies these days, and MS ones even more, since peer review is almost totally broken and for-profit junk journals have increased the science-y detritus to drown-in-it levels, and my sus usually starts when I read an abstract. It's depressing.

And about the "you look so GOOD!" comments. Yeah, um, NO. I'm standing there, overweight, with a cane, and a bandana that almost always is seen as a quick visual marker for "cancer" (I have had quite a few times when people assume this of me and start conversations on that basis) - so I do not in any universe "look so GOOD!". I look like a flobby cancer patient with a cane. But I guess it IS better than a horrified, "OMG! Are you OK???????" all the time. (eyeroll)

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Haha, you know I don't mind obligatory insults. Just no stinging rebukes please.

Yes, a tiny glimpse behind the curtain of research methods and statistics makes me start reading research with a view of skepticism. Sometimes I'm pleasantly surprised, sometimes I'm left thinking that I was right in initially suspecting that it wouldn't go far. I also have to keep my desperation bias in mind. I want to believe that I'll be cured or meaningfully impacted by this week's miracle diet, etc. Cui Bono? Not the patient.

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