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

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

Thank you ! Great column .

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.

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 :(

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

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.

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

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.

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.

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!

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.........

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.

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?

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.