Tis the Twitching Hour

By @Mwharvey

Recent weeks have brought national inclusion week focussing on employment for all and world mental health day in to our thinking. Both of these events caused me to reflect upon a decision to share something very personal with, my then new work colleagues, in an attempt to support others.

Over the last year, in a new role, I had noticed a very live conversation about the value of diversity in the workplace and the how those with a disability can and do work at all levels in our services. Discussions about how we understand diversity and our own thoughts about it are always positive, this, with a greater understanding and commitment to challenge the inequality others have and continue to face can only make the conversation in all our work places a richer one.

Within my first few weeks in my new job I became aware of a Neurodiversity employee group and for the first time in my work career I decided to reach out and make contact with people who may have similar experiences to me. I wondered whether I would be able to share my own story comfortably and even join in with whatever this group had to offer. Although I felt some safety in it being a new employer with colleagues that I barely knew.

My story started at the very late age of 13 when I was diagnosed with Tourette’s syndrome and then at 15, with a co-morbid condition which recognised my constant intrusive thoughts or, as I’m now advised, cognitive tics. It’s a condition my neuropsychiatrist at the time assured me was apparently disproportionately prevalent in people diagnosed with Tourette’s and has been the toughest thing I have ever had to deal with.

For those thinking ‘I haven’t heard Mark randomly throwing the F bomb and other choice swear words around in the office’ that’s because Tourette’s can be so much wider than that, with peoples experiences being very personal and diverse. This is definitely not an expert blog on Tourette’s just a (partial) blog on Tourette’s and me.
Don’t get me wrong, I do swear a lot – especially when giving presentations for some reason – but if I try to blame it on the Tourette’s make sure you call me out because I would be fibbing.

I do however have both audible and physical tics which for 35+ years I have tried to hide in what many people will see as normal movements and sounds. For those who read this I can guarantee you will probably start to notice them now but that’s ok, don’t be afraid to ask.

As for intrusive thinking this is a constant but given work colleagues can’t hear my thoughts, I only ever have to deal with those demons personally. As such I won’t burden you with these in this blog either, maybe one day.
My negative experiences centre very much around perceptions of me more than any direct impact these labels have on my ability to not just do my job but add value to it.

Occupational health services involved in recruitment have been the worst offenders. A memorable experience was a 25-minute phone conversation with an OH doctor who asked, in as many ways as possible (without actually saying it), whether I would be able to do the job and if I foresaw any potential ‘moments.’

When he finally found the confidence to say the word Tourette’s, I was able to explain the reality of my condition. He was reassured I wasn’t going to release a stream of profanity at the Director of social services or worst still the lead member but the stress of the call had left me physically defeated and I was displaying a fine yet painful array of physical and other audible ‘twitches’.

That was a few years ago and I have since developed ways to hide these parts of me but it has been a continuous and difficult challenge. As a 15-year-old boy wanting to be part of groups, meet girls, go out and do all the things teens like to do, was virtually impossible.

My facial tics were so extreme they would cause sores and abrasions to my face and hands. Not a good look if you’re trying to ask someone out, especially if the asking is interspersed with random noises. My late teens were therefore a little difficult. But from these early days I started to learn, for want of a better word, that my ‘symptoms’ were a positive.

My thinking processes appear (as doctors tell me is common) to be very different to others, something I have only understood as I have got older. My thoughts are very rapid and all-consuming, so doing nothing, or being in quiet areas is not an option. I must bring noise if things are quiet, activity if there is nothing to do.

The more I do nothing, the less stimulation I have, the more prominent my least welcome symptoms become. I have tried to use this knowledge as a positive when having to think through many competing and potentially complex issues, ideas and pieces of work.

A rapid yet thought through response when dealing with a complex safeguarding investigation, an over spent budget and the need to prepare a detailed report in the space of a very short time are all tasks amongst others I seem able to turn my hand to. Part supported by my ‘symptoms’ part by my need to manage and hide them.

I have, however, not stopped the tic that makes me contort my hand (you may spot it). Interestingly, chairpersons in meeting always take this as me trying to comment or raise a point, so I disproportionately get to have a say at our board meetings in Herts, which is a result! Sadly MS Teams has started to level that playing field. They clearly need to develop a Tourette hand form my use.

Interestingly, video meeting tech as amazing as it has been for us to all keep the show partially on the road has caused me significant issues. Seeing your own tics reflected straight back at you has an almost Newtons cradle effect of twitch, see twitch, repeat. Over and over again. To further the worry, you think that everyone else must be seeing this. Time to switch the camera off!

Having said all this, I am still very cautious about sharing this piece of me. A few months ago in my other role I was asked to write a similar blog but felt unable to do so. They have known me for years yet I worried about the impact this would have. In the end I declined, but my decision has troubled me ever since.

The months since then have bought much reflection and prompted me to respond to the blog request from my new Neurodiversity group colleagues as they seek to rekindle their network. I am also conscious that I have actually shared very little in this blog and am in awe of those that do share their own experiences and exemplify to us that they are valued colleagues and bosses regardless of their disability. Shame on us if we ever thought differently. For some like me I also believe that my condition actually helps a little despite the difficulties.

I have no idea if this brief reflection will make sense to colleagues who read it but as a social worker, colleague and individual, I can value the sheer breadth and wonder diverse workforces bring to any organisation or service.

Our differences make us collectively stronger. There are colleagues who will identify as Neurodiverse all around us with unique skill sets, experiences and insights who can help us be the best versions of ourselves – and with whom we might even become great friends. Being different is not an impediment but an opportunity to connect, grow and improve -and finally after many years, I think I am comfortable to accept I wouldn’t have it any other way.