Something I need to tell you...

Where Emma thinks about telling people she has an incurable disease.

Hello! Thank you for your emails, comments and shares…love you all. Don’t forget you can now leave comments at the foot of this email too.

Strolling through Twitter (carefully, as there’s always a risk of stepping in pooh) I came across this tweet:

studiosree @studiosree

I am not sure how people with Parkinson’s can hide their condition if they work FT. I cannot. Not on days where nothing works. Deep breaths and presence.

The replies and thoughts are an interesting mix. There are a few things at play. One, work environments have different social rules to private life and secondly, can you actually hide Parkinson’s?

Now I’m all for the living loud and proud - not being ‘normal’ (whatever the codswallop that actually is!) being part of a minority, being whatever gender you feel yourself to be, shagging whoever you fancy. Love is love. I think disability is only a problem because of society’s attitude. And so on… This is not a litany of my liberal leanings.

I’m generally upfront and honest about my diagnosis. I have been very straightforward right from the start. For me, it’s all about managing expectations. They know what’s happening, I know they can make informed decisions based on the information I have shared.

That’s not to say I haven’t had some weird reactions. I am also aware that some folks get very uneasy when I joke about Parkinson’s (don’t mention it but this newsletter probably isn’t for them!) I tend to joke when people get that rictus terror grin of not knowing how to respond. Then they replace it with the double horror where you have done the very un-British thing and shared something personal.

I am in a privileged position, I work for myself and actually, my business is to write about my diagnosis. So yes, I do share in the workplace with editors and readers. Judging from the replies to the tweet so do many, not just with employers but with clients as well. Employee rights differ the world over so in some cases it may be inappropriate to share or result in job loss. It might be unprofessional to share with clients. These are down to individual circumstances.

But how do you hide a disease like Parkinson’s? Or perhaps more properly can you? By the time most of us are diagnosed the symptoms have gone ape shit. Even with medication, it’s still a pretty obvious condition.

It seems that when parky is hidden the wrong conclusions are reached. The staggering around, slurred speech, tremors, and slowness all lead people to believe we are drunk. The masked face and delayed responses aren’t helpful in a nuanced work environment. If someone knows what is happening then they can be patient and understanding. And yet…

The crux of the matter is it is a total cockup that we have created a society that needs to be told when to be compassionate.

I don’t want to talk about PD…no seriously. When I started this writing journey I was going to write anything BUT Parkinson’s. See how that has worked out for me? Ahem.

I would love to be in a position where society took someone as a whole rather than try to pigeonhole. Squeezing them into the wrong fit only to realise there is a reason they are different. Then get all defensive about lack of normality and uncomfortable with the questions this raises. It is all pretty dysfunctional.

Personally, I think we need to be more Bill & Ted 👇🏻

With love

Emma xxx

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