Does anyone else live with a private diagnosis? I’m 44, single parent to two and I work. My MS is only known to my two brothers. It is not a ‘secret’, I am not hiding from my diagnosis or hiding from the world. The simple explanation is that my symptoms are not yet outwardly evident (thank God) and I am a private person who hates people sticking their noses in. I do suffer with symptoms but I deal with it privately and that’s the way I prefer things to be. But I often look at people and wonder if they too live with chronic health conditions that they keep private. I don’t know how common people like me are lol
My multiple sclerosis was “quiescent” from 2002 till 2008 and again from 2010 to 2017, I preferred keeping the disability to myself, unless asked tbh.
It only became apparent when I relied on the use of two walking aids from 2019 onwards.
I think this is quite an interesting topic to discuss.
I live in Japan were privacy is extremely complex so I find it very difficult to handle it very well. I am Danish, and as such I happily chat freely about just about anything, casually complaining or laughing about indeed very personal things. There seems to be an idea here that health is private, but health that concerns whatever you are doing is suddenly not at all private. There also seems to be an idea that telling people unnecessary things is very rude, but not telling people necessary things is also very rude.
I find this rather difficult to do well unfortunately. It is also apparently quite rude to ask things directly, everything is sort of talked about in a roundabout way. Similarly just saying something directly can be quite rude, and things have to be said in a kind of roundabout way.
There I land then in the middle of it. I have very little visible symptoms of MS. Slightly wobbly right leg when I walk casually and relaxed, such as down stairs.
Tingling and slightly not well coordinated fingers due to disturbed sensation.
Well, I should probably not carry very small valuable glass figures down stairs. That’s about it most days, but very cold or very hot days immediately triggers those pseudo-attacks that make symptoms much stronger, and then I suddenly have massive fatigue and memory problems and cannot even hold my coffee cup.
More than that however, the immune system suppressing medicine during these Covid times and the influenza peak season means I wear a mask and a face shield on top of it to work, every day all day except for when I eat lunch which I used to eat alone outside for quite a while but have now gradually come to handle in my tiny little office space shared with just 5 others who also mostly wear masks.
And that one is a bit harder I find. Indeed, were I a teacher in Denmark where I originate, I would not even be allowed to wear a mask since I have to show my face to the students. That’s a little more socially acceptable here.
My astronaut suit makes it quite obvious that something is not quite normal. Nobody else uses a face shield outside of like hospital workers.
Many a time the “are you really that afraid of Corona?..” and the like is tossed at me wearily.
If I do indeed not make people understand the reason, I feel like I’ll get into a bunch of other bothersome trouble. But the reason is rather hard to explain satisfyingly. Well I’m weaker to infections etc than others so I protect myself more. That’s simple enough to say, but doesn’t quite hit home with most people I tell it here. I have this illness that causes various issues and I try to stop them with medicine that makes me weaker. Okay, getting a bit better, but what issues then? Are you unable to work properly? And suddenly we are climbing into a different matter in that I now have to defend myself rather whole-encompassing.
And so I find it rather a delicate matter. I’d like to be understood properly. I’d be happy to discuss the illness, I think that’s quite interesting. But I’d rather not be judged and consequently treated unfavourably, and most talks about this illness tend to drift in that direction I find, unfortunately.
Well, why indeed would anyone care what issues I have beyond what bother it might cause them, outside of my circle of close people I suppose. So it’s not like I cannot say I understand it somewhat.
But I find it hard to figure it well what to do.
I do find a lot of sympathy with very obvious physical trouble like not walking well, hand in hand with respecting the elderly I guess. But something like MS causing me to have gas problems or not wanting to drink and eat together in large crowds for example, then it seems to become more of a “I’m the problem” kind of thing I find. And well maybe I am. But I am what I am, so that’s a little sad.
Yes, me. Work doesn’t know, the only people who know are my husband and my sister. I do not show or discuss my symptoms. I work from home, so it’s easier to hide it.
There is norhing wrong with that. Do what you think is right for you.
MS does not define us.
Well, it wasn’t hard to spot in my case that all was not well if only because I was a teary, howling mess at the start. Also, my physical symptoms (double vision, so couldn’t drive and hands not working well so couldn’t type) required explanation at work. But if you have the opportunity to keep things private for now and that feels right for you, good on you.
Hi ForgetfulT. When I was diagnosed some 17 years ago I did tell my employers ( I felt confident and secure enough to know that if this caused any problems I would get the Union in and it was clear that I knew a lot more about MS and to some extent about the responsibilities of my employee under disabilities act and the like). I didn’t tell my parents ( thought it would cause too much upset and worry) nor my sisters. Didn’t generally tell friends but that was mainly because like you I didn’t have visible symptoms and basically ‘it’s a bit of a conversation killer’. As symptoms became more obvious I did share more widely.
I think you are right - there are probably a lot of people with ‘hidden’ conditions. I know that I’ve always tended to think / assume everyone I pass in the street , sitting next to me in the train etc is fine , healthy and happy. I could be very very wrong!
Being unaware I had MS, I’ve bumbled through my life with the rep of being uncoordinated and clumsy…
On DX (2012) my life, sort of split…
In one life, I was a plucky, happy-go-lucky chap dealing with ever decreasing mobility in an uncaring world…
In another I was an under-pressure Area Manager for a Contract Cleaning Co that didn’t know I was running into difficulties…
At point in tippy-tapping, I realise when I did “come out” to my employer there was a lot of “Oh, dear/that’s terrible “ and not a lot else until I resigned and everyone breathed a sigh relief…
I know employers are expected to have a caring and compassionate attitude toward staff, but, in my many and varied experiences, they don’t…?
Your post serves to show just how complicated things can get with variations in social and cultural norms, and we are all the product of our own history & background baggage, so there is no right or wrong way to proceed, we each need to find what works for us and our particular circumstances.
For me, I will share with some people but not others based on nothing but how I feel with them.
Wishing you all the best
I wear it on my sleeve. Tell anyone who asks or where it’s relevant. I have a considerate employer which obviously helps. No right or wrong way, just what’s right for the individual. I have no visible symptoms so no one would otherwise know.