Living with TS - before and after diagnosis

Posted Mon 11th Nov 2019 at 07:00
by Robert Pointer

Robert Pointer charts his life from initial tics and school days, to navigating a career in the army and the corporate world.

 

I have been diagnosed with moderate Tourettes, I feel grateful that I do not require medication, and that while my tics give me shoulder and back problems, (which require regular sports physiotherapy) they are not life limiting.
I also consider myself very fortunate to have been able to accept my Tourettes before I even knew what it was, as I wasn’t diagnosed until I was 29.

Slowly throughout my life I have developed neck stretching, shoulder shrugging and general “fidgeting” tics.  These appeared and progressed, completely unnoticed by me as I have no recollection of when they began.  I have since discovered these tics seem to be quite common with CTS and Tourettes sufferers alike.
My vocal tic (defining my Tourettes) is cough/throat clearing, and for ease I will just call it my coughing tic from now on.

Overall this hasn’t limited my life or career and I have had an amazing journey so far, leading me to where I am now; which is a Business Coach, or more specifically an “Agile Coach”.  I quoted that title mainly as I see far move value in the Coaching aspect, and the title itself is heavily overloaded in terms of the industry expectations.

First signs

My first memory of a ‘tic’ was when I was 9 years old, and we were all out on a summer walk.

I didn’t even realise what I was doing until my dad said in a commanding voice.

“What the hell are you doing? You look like a dog taking a pee, stop that now”.

I was desperately trying to explain I couldn’t help it, and I didn’t know why I kept doing it, even after being told to stop.  My protests made no difference as he didn’t understand it either, and it resulted in the simple command

“You better have stopped it by the time you get home!”. 

The result was simple, I learned to tense that muscle without moving my leg, although occasionally it did cause me horrible cramp.

Secondary school holds the memory of my next “big” tic, one which came about after one of my friends showed me how he could make ‘waves’ with his stomach muscles.  I tried to do it a few times and although unsuccessful it was already too late; it had become a ‘habit’.

Throughout school I generally kept to myself and concentrated on working hard and staying out of trouble - some could say that I seemed shy.  I never felt the need to “follow the crowd” and looking back I see that it was mainly due to me being comfortable with who I was.  I put this down to my upbringing.

A good grounding

I am the middle child of three.  I have an older brother and a younger sister My sister tragically died in a car accident when I was about 5. 

My parents brought us up with pragmatism, a stereotypical British sense of “get on with it”, high moral standards, and an acceptance that it’s OK to be who we are.   I attribute much of my ability to cope with my Tourettes (especially before diagnosis) to this strong sense of “I am me, no matter what”.

Through the way they treated us and the responsibility they gave us, I learned I always had a choice in how I behaved and how I reacted.  They taught me that even though I may not like some things, I still needed to keep going and keep trying. 
I learned that in accepting who I was, I had to accept who other people were; which meant suspending my judgement of them. 
On balance, my dad taught me a strong sense of fairness and equality, and that it was OK to “fight back” when things went too far or were against my moral code.  These morals and responsibilities were to be tested when I joined the Army.

Tourettes and the army

I spent 5 years in the Army as a Radio Technician, and as my coughing/throat clearing tic had not become overly prevalent, it thankfully didn’t affect my career.  After all, who would want to be in battle when at any time you could give away your position by coughing.

During my basic training I was often referred to as “Blinky” by the trainers (though not by my peers) and this was the first time I noticed my “nervous habits” affecting my life (i.e. my work relationships).  My tics were referred to as nervous habits and I was strongly encouraged (OK ordered) to stop them; an unfortunate tactic that to date hadn’t even worked for my dad.  This treatment mainly resulted in me keeping a low profile and trying not to bring attention to myself; a strategy which had worked thus far.

The irony was, doing this ensured I did reasonably well academically, obtaining an award of excellence in my trade training, which was quite the opposite of “low profile”.  The overriding positive effect was my confidence, which improved significantly (that shy person is still there, I just have better strategies to deal with him). 

My first (and biggest test thus far) came about when I was serving in Northern Ireland.  I was attending a mandatory troop training session on chemical warfare and found myself on the wrong end of what can only be described as ‘a badly aimed attempt at humour by an otherwise nice guy’. 
While discussing the late stage symptoms (uncontrolled twitching) of a chemical agent, my troop sergeant shouted out “Oh my God we better get Pointer to the med centre NOW, I think he’s suffering from [chemical] poisoning”. 
The joke itself wasn’t the biggest issue (apart from the obvious embarrassment), I was more shocked that my troop Lieutenant sat at the front and did absolutely nothing, even as I sat there glaring at her to act.  Recounting it now I can still feel the hole it left in my gut. 
The Lieutenant apologised to me later that day …  although only on behalf of the Sergeant rather than her own inaction which made the apology feel a bit flat.  I shrugged it off and kept going, learning that I had to stick up for myself a bit more.  

Another memorable incident in the Army was when a Corporal (the same rank as me at the time) shouted across our compound “Hey twitchy, how’s it going?”.  I must admit that I reacted instinctively, driven by the desire to stamp out that nickname.  I shouted back “Yeah I’m fine thanks fat boy, how you doing?”.  Yes, it was insensitive, yet it had the desired effect as that’s the last time anyone used my tics in a negative way against me.

More importantly though, it highlighted to me that we all have things which we would rather people didn’t point out loudly and publicly.  We all have similar fears and insecurities, it's just that some people conceal them better than others.

Corporate life and Tourettes

When I left the Army, I settled very nicely into corporate life, joining a large telecommunications company before embarking on a full-time master’s degree in software engineering (I wanted to try programming ever since I first programmed a guessing game on my commodore 64).  I took with me the lessons I learned while in the Army; which were to work hard, learn lots and treat people with respect and kindness.

I can’t recall many incidents where my Tourettes was overly inhibitive, remembering that at this point they were still just “nervous habits”. 
There was one incident where a loud and obnoxious senior colleague decided to berate me (on a conference call) for coming to work with a cold.  I explained that I didn’t have a cold, to which he became offended that I was coughing down the phone every few words.  There it is, my vocal tic, and this is where/when it decided to take real hold.  I still had no knowledge as to why these things were happening, so I simply explained it away as a “nervous habit” and apologised.

One night down the bar, while enjoying a few after work beers, a colleague asked me directly “So what the **** is the deal with your face twitching and stuff?”.  When another colleague berated him for this question he just said “Rob’s been in the Army like me, and he knows I don’t mean anything bad.  Anyway, I’m just asking him a direct question”.  He was right, I wasn’t offended at all.  I’m not sure if it’s to do with the camaraderie between forces and ex-forces people, or that he at least asked me what it was rather than assuming what it was.
The Army had inadvertently given me an important life skill; the ability to try and listen to the message and filter out the poor delivery.

Family

Family can make a big difference in how we deal with life’s challenges, and a supportive family is obviously a blessing.  Putting aside the initial challenges with my dad, my parents and family are all extremely supportive and loving; and I count myself as very lucky to have this support network.

My wife’s family struggled with my Tourettes at first, and as I still didn’t know I had Tourettes, I couldn’t help them to understand.

When people are trying to help, they sometimes do strange things.  This time it was while I was engaged, my prospective in-laws suggested I try hypnotherapy, and they even paid for it.  I thought sure, may as well try it if it makes them feel better :)

As with most people, they were acting out of compassion (albeit misguided) so I have no bad feelings about this - I still smile to myself about the frivolity of it.

Having had an interest in hypnotherapy earlier in life I understood there were at least 2 major flaws in this plan

1. The person taking the therapy must be the instigator, and therefore have a vested interest in changing - I was happy with who I was.
2. This ‘solution’ was based on their view of what was happening, they had made an incorrect assumption that this was purely a psychological issue - ironic considering their daughter had suffered from ME as a child; which I understand to have been (and still is to some extent) incorrectly considered in the same vein.

Suffice to say the sessions had no effect, and at least it allowed them to move on as they had “tried their best to help me get over my habits”

Phew, time to get back to ‘normal’!

Life after diagnosis

As mentioned at the beginning of this article, I was 29 when I was diagnosed.  This came about as the result of one of life's little ironies. My big brother called me to say he had seen Pete on Big Brother and that, apart from the swearing, Pete reminded him of me. 

My brother approached the conversation with curiosity and insight, with a goal of helping me to understand what was going on, rather than how to stop it, or how to make others feel more comfortable with themselves.  What an amazing older brother I have!  He had sufficiently redeemed himself from the antics of the older brother I remember when we were young :D

This simple, honest conversation spurred me to approach my doctor, who referred me, and the ball was rolling towards my diagnosis. 

When I was diagnosed, I was offered medication to help control my symptoms, I decided that as I had coped “naturally” for almost 20 years, I was pretty sure I could cope without medication.  I promised my wife I would continue to re-evaluate this decision, something which made her happier with my decision. 

The diagnosis had the initial effect of causing my wife to feel sorry for me. Over time I have concluded that it was more about her realising I have something that couldn’t readily be ‘cured’ with a pill (or therapy), and she was unable to “help”.

My wife is amazingly supportive, and the only thing I find myself (occasionally) reminding her is:

“When I am tired, stressed or excited my tics can get worse.  When my tics gets worse, it doesn’t mean I am tired, stressed or excited.  These things are not mutually inclusive”

All in all, diagnosis has provided me a starting point for a conversation, so people can talk to me about my tics without feeling they are being insensitive.  This has helped employers, clients, and peers speak to me about my Tourettes from a position of curiosity and created a much less tense environment at work.

Where all this led me

I have always had a certain curiosity about what I say or do, and how people react to that.  This may have been due to having to cope with Tourettes before knowing what it was, or it may simply be who I am.

I became a coach because I believe that we can learn to accept others for who they are, and in doing so can learn to accept ourselves for who we are.  Doing this often helps us to move past our limitations and live a better, happier, more successful life.

Life can be challenging, frustrating and sometimes angering, and how we accept things can often change how we see them.  This change in perspective can in turn lead to finding better ways of invoking a change in others for the benefit of everyone.

This is something a friend of mine once told me that has stuck with me to this day:

“You cannot change how other people behave; you can only change how you behave towards them.  By doing so you can invoke a different response”

Who knows when that different response may spark others to make a change within themselves?

Insights and coping mechanisms

The main issue my Tourettes has caused me is back pain due to my shoulder tics knotting my muscles.  A combination of sports massage, exercise and Osteopathy keeps this at bay most of the time.  If I neglect my fitness then my health, my back and my Tourettes suffers.

If I were to summarise how I have coped with Tourettes, it would be in these points

1. You are who you are, no matter what.  What people think of you (or say about you) is not who you are, it is who they are.
2. Accept that some people feel more comfortable pointing out your differences than admitting their own, others are just curious and empathetic. 
3. If people you love seem frustrated or upset at you or your Tourettes, they are likely just trying to figure out how they would deal with it.  You are not them; you are you.
4. Surround yourself with people who share your values.  They will help build you up, not tear you down, and are usually willing to let you know you when you are ignoring your values.  Just remember, your best friends may not always agree with you.

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