Tourettes in the work place

Posted Tue 10th Oct 2017 at 06:00
by Vicky Hallam

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Tourettes Action talks to Emergency Care Assistant, Vicky Hallam about life in the Ambulance service and the relationship between her TS and worklife.

What is your job title and can you explain about your role?

I am an Emergency Care Assistant in the Ambulance service. My role is to assist the paramedic whilst working in a double crewed ambulance. I see and treat patients as well as drive the ambulance on blue lights. We share the work load, obviously if there is a life-threatening incident, the paramedic in their professional scope of practice, will take the lead and administer drugs as necessary, but usually we share the responsibility. I love my job, even though it is stressful and fast paced, it suits my mind. I can be doing anything from chatting and giving advice to then performing CPR, the diversity is startling.

When were you diagnosed with TS?

I was diagnosed with Tourette’s at 3 years and 10 months old. I originally was struck on the head with a spinning top from a friend who wanted to play with my toy, naturally I wanted to play with it at the same time and we had a tussle – moments later I had been whacked over the head with the toy and initially cried, two hours later….. my tics started to manifest.

What are your symptoms?  Do you experience any of the TS co-occurring features or conditions such as anxiety, depression, OCD, ADHD?

My symptoms are so varied and have gotten stronger the older I have become. Sometimes they take over so much that I can’t get out of the house because I don’t want to explain myself or be looked at like I’m sub human.

I am not sure if I have any other additional ‘bolt-on’s as I call them such as OCD or ADHD, however I don’t rule anything out. Everyday can bring new surprises.

Do you feel that your TS has to be managed – either through clinical treatment or self-management.

When I was 14 years old I joined the air cadets, I desperately since the age of 8 wanted to join the royal air force. I saw cadets as a stepping stone and a chance to practice my tics ceasing. Every night on parade I practiced keeping my head still and every time I managed just one minute more of not moving – it was a success.

I manage my tics myself and sometimes I can’t talk for wanting to croak out some noise that even I haven’t heard before.  In my work time, I am often very jovial and some would say the class clown, sometimes this humour masks the tics and I can get away with releasing the tension through this method – something I have become quite skilled at.

You have a very stressful job that exposes you to lots of challenging situations – what affect does this have on your TS and how do you manage this?

The work affects me because I can’t switch off and yes, I take it home. Some people’s lives touch me so deeply and I can feel nothing but empathy and sympathy and I can relate. I let go at home often making guttural noises that are so loud it drowns out the TV!   How else do I cope? Exercise and mediumship.

Did you disclose to your employer that you had TS before starting the job?  If so, what was their response?

I came clean about my Tourette’s immediately with the Ambulance service as I didn’t want it coming back on me in any way. Occupational health were brilliant with me and for the first time in my employment life they asked me what could be done to improve my work life and what is it that they needed to know. The only thing was this information –  that  I didn’t mind them knowing – but this wasn’t filtered down to my workplace, which resulted in misunderstandings and bullying issues that carried on for months in the service. I only told people that I trusted, and in the beginning that was few.

When I was in the RAF I was accused of being a liar to the extent that my Sgt at the time arranged for me to be re-statemented to prove I was a liar. Well the results came in – rip roaring Tourette’s and nothing else.

In my workplace before the ambulance service I was bullied horrendously by the staff and ostracized for being different. Essentially I was viewed as being disruptive and an annoyance to staff, so I was faced with being put on a different ward or permanent nights – I needed a job so took the option of nights. The bullying continued and didn’t stop until I left to join the ambulance service. I’ve left every job through being bullied – this job when I choose to walk away will be because I choose to and not because I am pushed – I am not prepared to go through that mental anguish again and even though I have faced bullying in the service I would rather be the fly in their ointment than leave.

Do you feel that your employer takes your condition into consideration with regards to your working conditions, i.e. have any reasonable adjustments been put into place or do you receive any form of support?

Apart from the initial request from Occupational health when I first started I have not had any help or support. You make friends, you talk to them and we help each other. There is the ‘staying well service in the service’ which if I felt I needed I would utilise but I can do this on my own.  I’m the one living through it and basically I just need privacy after a bad day, and headache tablets after a session of guttural noises, as the pain in my head is horrendous and I just can’t stop it.

Do you feel you have to supress your tics at work, whether answering yes or no, can you explain why?

Yes. I have come to a stage in my life though where I’m really getting tired of hiding. I’m tired of not being able to express who I truly am for fear of offending someone. I am 34 – I don’t want to be 40 or 50 and still feel like I need to explain myself. On the same hand I don’t want a patient to feel as though I am inadequate at my job, they are having the worst day of their lives and then I turn up….

I’m torn sometimes because I don’t want patients to lose confidence in my ability to perform my job. In my personal life, I’m a lot more ruthless – if they don’t like it then that's their tough luck, although some days I’m very strict on myself and self-limiting because I don’t want the world and his dog staring at me. 

As your role is public facing, and you are coming into contact with new people all the time, how do people generally react if they notice your tics?

To be honest I’ve not had too many issues with people noticing, or rather I should say, brave enough to ask me about it. Occasionally I have had some strange looks. I have dealt with a couple of patients who themselves have had Tourette’s but because im there in a professional capacity I can’t really ‘let rip’,relax and be me, I’m holding back all the time.

Although Tourette’s has become a more household name than it was 15 years ago, and the benefit of Big Brother really put it on the map, largely it is misrepresented with false information that only attributes TS with swearing.  With my foul language I make no apology, that with me is no longer Coprolalia which I was originally diagnosed with, that is just me – raucous ex forces behaviour!

Would you say that your own state of mind, i.e. feeling relaxed or anxious about your tics, reflects back in how others respond to your tics?

To an extent yes. Absolutely what you put out there you get back however some days I just can’t control it.  As a young woman I’ve always had the ability to keep it in check, but since being exposed to such a vast array of incidences – I’ve struggled to do this because of the emotion connected to my work.

I am a very sensitive person and my work and the people who I deal with effect my mood (happiness,sadness,harmony) massively. If I have a resuscitation, it is extremely hard for me as I can’t help my feelings and tics from coming to the surface, because it’s just who I am.

Sometimes my anxiety is positively tangible and yes people pick up on it.  Sometimes I might be anxious and not even know why but generally it makes for a bad day if that foreboding feeling resides at the start of a day; and naturally anxiety leads to massive tic attacks. 

Lots of people choose not to disclose that they have TS at work.  How important is it for you that your colleagues know that you have TS?

It was important for me to disclose my Tourette’s to the Ambulance service but to my individual colleagues – not all of them know. 

The reason I disclosed my Tourette’s in the ambulance service is so that if anything occurred I wouldn’t be stuck without any leg to stand on. I believe that transparency is key and that integrity is paramount as I really don’t have anything to hide. If anybody wants to talk to me about my condition I am more than happy to discuss it, but people aren’t brave, they can be sometimes quite ignorant and rather than educate themselves through myself who’d be happy to talk, they summarise based on my personality (regards the swearing) and can make snap judgements. I’ve had it all of my life and its exasperating trying to educate people that simply do not care. Lots of colleagues have been very supportive but when it really comes down to it, nobody really gets it and I’m very much on my own.

Do you feel that your TS has given you any advantages in your profession?

Only 1 advantage – when I see a patient with TS I am the SAME. That is the only advantage. I would not like nor have I ever used my condition to exonerate my actions and I do not welcome preferential treatment. I take the reward based on my own merit and I take the hit when I mess up. I have simply been myself and overall, that has been acceptable. Other places I have worked, I have been hated and pushed out of that employment for being different.

What advice would you give to people who may be concerned that their TS will limit their work opportunities?

Just keep being real, don’t hide and don’t pretend to be something you’re not. You are good enough right now – job or no job.  Don’t give up on your dreams and don’t convince yourself that you are not good enough. 

You’re a tool to teach others simply by how they deal with you, you are teaching people how to know and share that compassion that sometimes you feel might never be shown to you. 

Look out for Vicky who will be featuring in BBC series: '999 What's Your Emergency' between now and Christmas.

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