Tourette’s & The Grief Process – Conditional Publications

Editor & Founder of Conditional Publications, Vrinda Pendred, discusses the grief process, from denial to acceptance, and how it relates to Tourette’s Syndrome.

So far in this series on Tourette’s Syndrome, we have discussed:

If you missed any of the above articles, please click one of the links above to read them.

In each of the previous articles, I have sought to outline the basics – what Tourette’s is, the possible causes, and the seemingly endless ways people have attempted to treat it, in their desperate search for relief. I have talked about my own search for a ‘cure’, and at the end of the last article (Tourette’s – Diet & Vitamin Regimes), I shared a story about accidentally overdosing on niacin and learning what it’s like not to have Tourette’s Syndrome – with the knowledge that it would be dangerous to repeat the exercise and all my symptoms would return in full force as soon as the niacin wore off. That was a turning point in my life, because it marked the moment I stopped searching for cures and realised I needed to take a more philosophical approach to my condition.

The Trauma of Tourette’s Syndrome

Around the same time as that niacin episode, I happened to be seeing a psychotherapist for recurring episodes of depression; we met once a month for about a year. In our final session, after unloading all the old emotional baggage I had been carrying for so long, she looked at me for a while and then said something to the effect of:

‘There’s nothing really wrong with you. You’re married, you’re a mother, you have a stable job that you enjoy, you have plenty of friends. You’ve done well for yourself, despite any childhood setbacks. At this point, I think your biggest problem is the Tourette’s. It has disabled you from doing so many things, growing up. It causes you great physical pain and discomfort. It makes you self-conscious. And there is nothing you can do to stop or even help it. I think this depression is post-traumatic stress resulting from your lifelong condition, and you probably just need someone to talk to about what you’re going through, so you don’t fall apart. Unfortunately, I can’t give that to you forever. The NHS won’t fund it. But I think it would help a lot if you started talking more about your Tourette’s with family and friends.’

I was stunned. I had lived with Tourette’s ever since I could remember. It was as much a part of me as breathing. It had never occurred to me that it might have traumatised me. But the therapist had to be right, because as soon as she suggested talking about my Tourette’s with family and friends, I felt myself physically seize up. I told the therapist:

‘If I talk about it every time it causes me problems, I’ll be talking about it all the time.’
‘I’ll just annoy everyone.’
‘They’ll find it boring.’
‘They’ll get sick of me.’
‘No one wants to hear me moan all the time.’
‘I’m trying to be positive.’
‘I don’t want to scare or upset anyone with the crazy thoughts I’m having.’

Yet as I talked with the therapist, it became clear that I was just making excuses because I’ve always been afraid of being vulnerable with people. I’ve also always found it difficult to support others when they come to me with certain types of problems, and I think it’s because I find it hard to talk about my own.

The Grief Cycle

That was years ago, and I never saw that (or any other) therapist again. In her absence, I took her advice and made that leap: I risked talking to the people who really mattered. Even now, it’s not always easy. Often I still keep my thoughts and feelings about living with Tourette’s to myself, because I don’t want to moan all the time, and I am trying to be positive. But when things get really hard and I need to let it out…I do.

And when I learned to do this, I realised that for more than twenty years, I had been caught in the first of the five stages of grief, as outlined in Elisabeth Kübler-Ross’ 1969 book On Death and Dying: denial and isolation. I had also privately spent a lot of time in stage two: anger. I had spent years pretending to myself that there was nothing wrong, that I didn’t need help, and that because there was no problem, there was no need to reach out to anyone. And when something forced me to acknowledge my disability, I railed at nature, at God, at my ancestral genetics – at everything that might have put me in that position. Neither state of mind did me any good. Rage, just like repression, only makes you feel sick inside and causes greater stress – worsening the problem.

This inevitably led to stage three: bargaining. I would think things like:

If only I could just finish this one tic and then never have to do it again, or
If only this one tic would go away, then I could deal with all the others.

This was nonsense, because that one tic would eventually fade (remember, tics ‘wax and wane’), but whatever tic replaced it would be just as awful, and I’d find myself making the same bargain. Sometimes that bargain would be worded as a prayer. When this prayer went unanswered, I would fall into depression – stage four in the grief cycle. I felt empty and helpless; and as I stared into the future and considered the fate that awaited me – the reality of this condition continuing until my death and potentially causing real crippling damage as I grew older and frailer – I confess I often wanted to die.

Remember there are five stages in the grief process; but I cycled through these first four time and time again, throughout my formative years. The difficulty was that no one had died; there was no one-off event from which it would simply take time to move on. The trigger of my grief was always happening, and would keep happening for the rest of my life. Similarly, you can’t really call it post-traumatic stress if the source of trauma is still present. So, the question is: in such circumstances, how on earth do you heal and move on to the final stage of the grief process – acceptance?

The answer for me was: through surrender.

Getting Off the Emotional Roller Coaster

In 1838, Edgar Allan Poe wrote a ghost story called Ligeia, inspired by the gradual death of his wife – so gradual that he couldn’t stand it. He told people that as much as he wished he could keep her alive, he just wanted it over because he couldn’t stand being on that emotional roller coaster anymore, repeatedly getting his hopes up, thinking she might survive, only to be disappointed again. To give a more modern example, think of the 2017 film A Monster Calls and the book from which it was adapted.

Ligeia resonated strongly with me, when I first read it, because I had been on that emotional roller coaster all my life. As much as I hoped for a cure for my condition, I had come to realise that for me, at least, there wasn’t one. The endless treatments I had tried were just keeping me strapped into that roller coaster chair. So, it stood to reason that if I wanted to get off, I needed to quit the treatments. In other words, I had to give up searching for a cure and surrender to my situation.

Sometimes when I talk to people about this, it upsets them, or they accuse me of being pessimistic. Usually, these people are either caught in the first four stages of grief cycle themselves (either as parents or as Tourettics themselves), or they have no experience with Tourette’s and don’t know what I’ve been through. And that’s okay. If someone had told the fifteen-year-old me that I needed to give up searching for a cure, if I wanted to feel better, I would have been upset too. But at thirty-four, I can say that surrendering to my fate was what finally got me to that final stage: acceptance.

How did I get there? Ironically, it was mostly down to my traumatic experience with medication. As I described in a previous article, long-term use of sertraline led to a negative feedback loop in my brain. Every time my doctor increased my dosage, my brain would compensate by adjusting my natural levels of dopamine and serotonin. The doctor’s solution was to keep increasing that dosage. After more than two years, my solution was to quit the drugs. Looking back on that experience, I found myself reflecting that maybe that was my brain’s way of saying, ‘I don’t want this. You’re fine the way you are.’

I was also struck by how much taking those medications changed my personality. They flattened me, deadened my spirit, sucked away my interest in life, drained me of my passions, and destroyed all my creativity. In fact, there’s much evidence to suggest high levels of intelligence and creativity often accompany a diagnosis of Tourette’s – so to cure it might mean to lose all those wonderful ‘side effects’ of the condition.

I concluded that it didn’t matter whether the drugs helped the tics or not – because I was no longer me. And despite far too many phases of insecurity and self-loathing as I battled through these experiences, I came away from the medication with a huge sense of relief to have found my way back to me again. There was a time when I was genuinely frightened the drugs might have changed me forever. When I felt like myself again, I suddenly appreciated who that person was. For the first time in my life, I wanted to develop a deep loving relationship with that person – tics and all.

Acceptance

Reaching that crucial fifth stage in the grief cycle didn’t happen overnight; it took many years. But the more I learned to talk about what I was going through, the more I came to accept that this is who I am. I have Tourette’s. I jerk my muscles and my head, and strain my eyes, and make silly noises, and all the rest. I can’t help it, so why should I be ashamed? Why should I hide it or pretend it’s not there? If someone has a problem with it, it really says much more about them than me.

I knew I’d finally achieved true acceptance one day when I was at work, uncontrollably chirping at my desk, and a colleague asked what that sound was. Even just a year earlier, I would have made up some excuse or tried to convince that colleague he was hearing things. But that day, I said, ‘Oh, that’s actually me. I have Tourette’s. I can’t stop chirping. Silly, I know.’ And you know what my colleague did? He grinned, and then laughed – not at me, but with me. I joined in, and it felt so good to laugh about it.

Since then, I’ve made a point of telling everyone I have Tourette’s, if it’s relevant to the situation / conversation. Every time, I feel a weight lift higher and higher off my shoulders. But perhaps more incredibly, I experience the beauty of the people around me accepting my Tourette’s, too.

Don’t get me wrong. Sometimes I still double backwards and return to some of the earlier stages in the grief cycle. But it doesn’t happen often, and I find my way back to that final stage soon enough. Because fighting it won’t change things. This is who I am. I have Tourette’s, and that is never going to change. And maybe that’s okay.

Is This Approach for Everyone?

My eleven-year-old son only received his diagnosis earlier this year. He’s just at the beginning of the grief cycle; and I suppose, in a way, it’s started a new cycle for me. I’ve accepted my own condition, but I haven’t yet accepted what I’ve passed on to my beautiful little boy.

A few times, he’s asked me, ‘Will it always be this awful?’ And I’ve had to tell him honestly that it might get better. He might even grow out of it. But it might get worse. Alternatively, maybe he’ll learn to integrate it into his life so thoroughly that he’ll hardly notice it anymore – like I have.

He once asked, ‘Do you think there will ever be a cure?’ I said, ‘If there were, I wouldn’t take it.’ He was understandably confused, so I explained that the chemicals involved in Tourette’s Syndrome are also tied up with so many other things, like creativity and dreams and emotions, that to remove the tics would be to change who we are.

He then asked, ‘So if there’s no cure, and there’s no good way to treat it…how do you deal with it?’ I said, ‘That’s a very personal thing. But for me, I felt better when I finally accepted my Tourette’s.’

He said, ‘But I already accept mine. I know I have it. That doesn’t make me feel better.’ I smiled and told him, ‘That’s not real acceptance; that’s acknowledgment.’ The fact is: as long as you continue to fight your own body, you’re going to hurt for it. And we all know that any attempts to suppress tics only make them worse. But I can’t force my child to give up that fight. He has to find his own way – and it won’t necessarily match my own.

Nor will yours! Nonetheless, I think acceptance is a key part of any Tourette’s ‘recovery’ plan. Even if you find physical relief from medications or diet and vitamin regimes, or exercise, or meditation, or whatever – you’re still devoting energy to attempting to tame a wild beast bursting out from within. You’re still dealing with a very real and very painful physical condition, not to speak of all the social problems it might cause. And just as my old therapist said, that is bound to be traumatic to some degree.

So, treating Tourette’s is not just about reducing tics. You have to heal your heart, too. And in doing so, I guarantee a weight will lift away, allowing you to breathe again; and that in itself will help ease the tics, just by easing the stress.

Closing Thoughts

I hope you found this article helpful, or at least informative. Please remember I am not trying to push my views on anyone, or advocate for or against any kind of treatment. I am simply sharing my personal experiences in living with this condition. If you have any thoughts on the subject, I’d love to hear from you in the comments box below.

In our next article in this series, we’ll be looking at how to help our children with Tourette’s, as they embark upon their own journey through the grief cycle – made more difficult still by bullying, teachers who just don’t (or refuse to) understand, and raging hormones making tics worse. Be sure to subscribe so you don’t miss out.

Finally, if you’d like to read a detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app. US Readers UK Readers

Until next time….

Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.

Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder. In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.

She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladder, inspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.

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