Pretending to be well so we don’t look like we’re faking being sick

I've even coined a new word for people who try to conceal their illness

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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Halloween is five days away, and if you have kids, you’re running out of time to have your costumes ready. My wife and our three boys have everything figured out, minus some finishing touches — unless I want to dress up, of course.

Fortunately, I wasn’t planning on it because wheelchair costumes tend to take a bit more creativity. When I began using mine, I was warned about curbs, steps, thresholds, uneven terrain, and more, but no one mentioned it’d make it challenging to come up with a good costume.

Wheelchair costumes exist, of course — I was a race car last year — I just don’t feel the need to disguise my visible disability the way I did when it wasn’t apparent.

When my multiple sclerosis (MS) symptoms were invisible, or less visible, I tried hard to wear the disguise of a nondisabled person. Not just on Halloween, but on every day of the year. I didn’t fake being ill; I faked being well. I still catch myself doing it sometimes.

I think everyone with a chronic disease probably does it at one time or another. It could be as subconscious as saying “I’m fine” when I’m clearly not. It might be as blatant as wanting so much to appear capable that I trade three days worth of energy spoons for three hours with friends. Sometimes it’s worth it, but I often have to ask myself who I’m trying to impress.

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Putting on a ‘well’ costume, concealing disability

There’s another, darker reason we put on our “well” costumes. People with a disease that’s hard to describe, like multiple sclerosis, are used to others, even medical providers, assuming they’re faking their symptoms. Rather than risk feeling like we won’t be believed, we’ll downplay symptoms or just outright pretend to be fine.

I’ve been fortunate in this regard, but many others haven’t. I may have gotten some skeptical looks or questions, especially during my diagnosis, but no one has flat-out suggested that my MS is all in my head.

Well, come to think of it, it is all in my head, and I have the MRIs to prove it. At my level of disability, I’d actually be a little flattered at anyone thinking I have the dedication required to fake this. I’d also be a little offended, since that sort of implies that I couldn’t think of anything better, or easier.

A hypochondriac is a person who worries about their own health constantly. If we fit that definition, it’s unwillingly. On the other hand, a person who falsifies, exaggerates, or even induces an illness for sympathy and attention is said to have Munchausen syndrome.

I couldn’t find a word for someone who falsifies being well, so I decided to come up with one. I wanted our new word to sound authentic, so I dug around in an online Latin dictionary and found dissimulo, which means to pretend, disguise, or conceal, and sanus, which is to be healthy, well, or sound.

I submit to you: “dissimusan (noun) — one who conceals, or attempts to disguise the symptoms of, an illness.”

It probably won’t catch on. Not even in common usage. And even if it does, much like its inspiration, multiple sclerosis, it’ll be anything but common.


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

Michelle Aho avatar

Michelle Aho

Thanks for writing you article. I can completely relate, I’ve been & still have to for over 10 years - the 1st 15 years were but even then things would pop up. Now in 2nd progressive, I just lead a life of isolation bc people don’t seem to “get it”, even the ones that say ‘I have a friend w/NS so I totally get it. They still don’t..

I have to fake being “healthy” bc if I don’t I get the same crap everyday: what’s wrong w/you ? Maybe if you quite sleeping all day and got a full time job, you wouldn’t feel so bad. Then there’s the ‘stop being so lazy & using your MS as an excuse to not do anything, your fine, your just faking it. Get a damn job, stop living off the government and then your problems will go away.

It’s gets irritating when people are like: there nothing wrong wi/with you, you look fine to me. I’ve even gotten those comments from medical providers. It’s not worth leaving the house bc I can’t do anything and when my family doss something, I’m not invited bc “you’ll slow us done” or “no one is gonna push you in a wheel chair, they wanna have fun, not baby-sit”

I’ve found it better to just not have communication w/most people. So, I just spend most of my time sleeping bc the fatigue is so bad. I recently broke my ankle and had a hard time getting help bc “if it were broken you’d be more upset”, well these people didn’t see me 2 hours before when I was crawling around the floor looking for my cell phone, to try to get some help. Even the “help” I got hurt as much as the break (my foot was at a 90 degree angle from my leg. It was gross, Then the doctor put one of those old plaster of Paris casts on bc she did an X-Ray,’she put it on too tight & it’s the leg w/the left foot drop so for about 2 weeks, the foot would spasm against and it hurt so bad. I tried asking for help but I couldn’t get it.

Most of the time it’s not even work it to ask for help - and I made the mistake of asking for help, which never works. The hospital/doctors were complaining about my medications & I said to the surgeon: you know I have 2nd progressive MS. She responded w/a “no, I didn’t see that in you chart”. Which most likely means she didn’tt look at my chart. Then the next provider came into my room and right away I asked them: did you know that I have MS, once again anther “really ? I had no idea”. So they said they were sending me to “rehab” but after I got there, I found out it was a hospice/LTC. & they just outsourced some PT/OT 2X a week for like 15 minutes, it was a disaster so I ended up leave after 8 days bc it couldn’t get my needs met.

So, I can completely relate

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Benjamin Hofmeister avatar

Benjamin Hofmeister

"So, I can completely relate"

Yes you certainly can! Unfortunately you have to get MS to "get" MS. It's a rare friend, provider, family member, etc that understands but still doesn't get it. Thanks for such a great comment Michelle! I get it.

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Cynthia avatar

Cynthia

Thank you ! Great column .

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you for reading it!

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Hilary Sexton-Barrow avatar

Hilary Sexton-Barrow

Well! Who thought there was a word for 'playing well'?! I SOOOOO totally get that one.

If there's one thing I learnt pretty quickly after my 2021 diagnosis of Secondary Progressive MS, is that if you're honest by saying, 'I'm tired', or 'I feel a bit spaced out today' the less you get invited out, or phoned or visited, creating social isolation pretty fast. It would seem folks quickly assume this is your default setting, hence then not wanting to bother you.

It makes perfect sense too. Addicts are encouraged to say 'no thank you' over and over again to temptation, eventually leading to simply not being asked anymore, and eventually removing the enticement. Go on a weight loss programme. It is promoted that you decline certain foods. Finally there is an acceptance that we won't consume chocolate cakes and crisps and the offers stop coming our way.

But the psychology of honesty sharing for us MSer's doesn't seem to help our social lives, only our medical practitioner encounters. The more we say 'not today I don't feel great' will quickly be taken as our general state of affairs. The day we feel great the invites have stopped.

How to get a good balance? For me, that meant letting go of some old 'acquaintances' (recently didn't get an invite to an ex-work colleagues leaving party as it was thought I'd be too worn out), make new MS friends who 'get it', and stick with tried and tested long-term friends who'd I'd trust with my life ...... because I do, and I love them all for sticking with the communication.

How about another mantra Ben;? -"ego vero" - self truth? As there's no point in masking the truth to yourself. Accept and embrace.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Ooh, I like ego vero. I did try to mask the truth from myself and wasted time I'll never get back by telling myself, "I'll do that when I feel better.". I'm working on it. If MS would just stay the same or stick to a schedule it'd be easier to find the balance.

Thanks for reading and for the comment Hillary!

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Claudia C avatar

Claudia C

Thank you for a great article. After not telling anyone the first twenty years, I had to because of cane use. The result from many who asked if I had knee problems (apparently, acceptable)... crickets :(

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Claudia! Earlier in my journey I used a nerve stimulator device strapped to my lower leg. Someone saw it and asked if I was under house arrest. I should have just said yes. That would actually be easier than trying to explain MS.

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Milidi avatar

Milidi

This is an AMAZINGLY awesome and accurate word!! I’m going to start using it! Thank you!!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Milidi! Please do!

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Kristi J avatar

Kristi J

Excellent article Ben! It is the first I've seen addressing this topic. And a perfect follow up with Hilary S.'s comments. For me, the biggest issue has not been people's disbelief -it's been what Hilary describes - growing social isolation. Every time I have to cancel important events (like a friend's wedding), or even casual get togethers or long-anticipated trips - it feels on step closer to losing those friends who can't "count" on you. I cannot tell you how many times I just force myself if I am able to manage it, or attend a hot summer day event rather than say no. Is it always worth the 3 day recovery? No, but sometimes. Then I get scolded from my family ....LOL. But it would be very lovely to just be open about it, not feel guilty, and still have everyone feel they could count on me!. Thanks for writing this.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Kristi! I wasn’t ever what you'd call social but I miss it terribly now that it's gone. I feel like I'm being quarantined by a non infectious disease.

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DIANA P avatar

DIANA P

After 42 years of MS (I'm now 65) I have two friends from 'before diagnosis' who still come to visit me as i used to meet them for lunch somewhere central to where we all live. It used to kill me for days after these lunches. I finally gave up pretending that 'yeah i can get there no problem!' One friend now has to drive an hour each way for lunch at my place. So, i stopped pretending but now I feel so guilty that they have to come so far.
ps love dissimusan

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Diana! It feels wrong leaning on friends. I'm still not good at it (I probably never will be). It really makes you appreciate the ones willing to accommodate your disabilities.

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Elizabeth Hess avatar

Elizabeth Hess

I think it takes me forever to figure out I am not feeling well. It may be well into the afternoon when I finally say “ Oh, I am not feeling well”. I think that is because I do not feel okay on so many days, but I just keep going. It just takes me longer to figure out I am sick, this isn’t just my MS.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I'm fine.....well fine for me. Thanks Elizabeth.

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Lisa avatar

Lisa

So happy to hear the plight of the dissimusan articulated so well. I faked being well with mostly invisible symptoms for the past 30+ years. Mostly so I could keep performing meaningful work in a competitive field. Was forced to medically retire 4 years ago, but still heard 'but you look so well' from a doctor recently. I too sometimes don't realize that I feel bad most days until I have the rare day when I don't! I'm not happy that others have the same problems but in a selfish way it's comforting to know I'm not alone. Thank you.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Lisa! You should come up with a word for needing a good day in order to recognize that the others weren't.

Ben

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Mary M Thompson avatar

Mary M Thompson

Great article. I'm full-time scooter now, and the thought of being a race car is CLASSIC!! Now, if I only knew how to sew... Just like kids love to make the noises their animals make, maybe I should get a recording of a race car revving and tires squealing! Thanks for getting my imagination working!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Mary! I wasn’t nearly that creative. I found that panels made to dress up a wagon often work for power wheelchairs.

Ben

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TheCrankyOne avatar

TheCrankyOne

Yup. Fakers the lot of us. If it's not faking being sick to our disbelieving medical practitioners then we're faking being well to shut up those who either don't think we have any sort of medical problems (cue the gospel choir to sing that song that has a chorus which goes "But you look so good...", or want to feel superior by gently anointing us with some pity for our plight and then go about their day feeling that they have done the mandatory good deed for that particular rotation of Planet Earth. Of course that cane or walker or wheelchair that we cannot do without is nothing more than a strange choice of fashion accessory for those with a warped mind and malfunctioning body.

As far as "...saying “I’m fine” when I’m clearly not" is concerned - these days I respond to all enquiries about my welfare/wellness status (e.g. "How are you going?") with just two words: "Muddling through". Those two words are honest, they reflect what is really going on, and if someone genuinely wants to know more about how I'm going they can enquire further. Mostly, people don't actually want to know and it's just an automatic social pleasantry - one day try responding to someone with "I'm having a really crap time at the moment", and (if your reply actually registers) sit back and see their discombobulation at being given a response which disturbs their equilibrium and expectations of "appropriate social behaviour". If nothing else, giving that sort of response to a person who really doesn't give a s..t about how you actually feel can be good for generating an evil internal chuckle or two at intermittent times for the rest of that day! What is it that they say? Oh yes: "Small things amuse small minds" and as our MRIs can prove - ours are shrinking.........

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I sometimes think we should get a pass on socially acceptable behavior, but acceptable society thinks otherwise. It's just the norms by which we were raised. The proper response to, "How are you?", is, "fine", whether you are or not, because the asker, more likely than not, wasn't really looking for anything more than that. I feel like I'm getting better at detecting sincerity. We'll see.

Ben

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Heather Buckridge avatar

Heather Buckridge

Thanks for the article! I was feeling a little bit on the downside and this brought me up a bit 👍 I think maybe I was feeling a little alone 🤔 I know we should reach out and connect with other people that have MS, but I am just so tired all time.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

You're very welcome Heather! I mostly rely on text and forums for connections these days. I never thought a long phone call could tire me out, but it can, can’t it?

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Tom A. avatar

Tom A.

Hello Ben: Three sisters- My mom and her two sisters (my aunts). It was early in my MS career but relapses caused tripping and cane use. Yes, I could have faked it and blamed it on a temporary leg twist or something, with my mom. The two sisters were opposites- one pretend, one be honest. I phoned the second, explained the situation and pondered over telling my mom. I thought it best and she agreed. So I did. The first sister was furious. Later, my mother would pass, and the furious sister (a dissimusan for sure) in a holiday sit down conversation politely blamed me for my mother’s death; the distress that it caused her. All of this is in addition to work life, which is another book in itself. We all should get some kind of life time achievement award for having to deal with this stuff. It’s as significant a symptom as any of the others. What’s the treatment?

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Wow! Sounds like dissimusan by proxy. (I made up one, why not another?). Unfortunately, I haven't been able to make up a treatment.

Thanks for the comment

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Kim Anne avatar

Kim Anne

Ben, your article was remarkably relatable -- thank you!
Now, since you are adept at creating convincing and authentic Latin medical terms, please do the MS Community the biggest service since MRIs, and find a replacement for "The MS Hug!" Is there a more sappy, cloying, and insulting term for very real pain in the medical lexicon? I cannot imagine a cardiologist saying "We call that pressure you're feeling 'a little Coronary Kiss'," or an oncologist diagnosing your breast pain as "Tumor Titillation." Yet neurologists perpetuate this patronizing and dismissive nickname for a painful symptom of MS.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Oh, I have a word for it, but it's not latin and shouldn't be used in polite society. 😆

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