My own diagnostic journey has inspired me to pursue a PhD

Posted Tue 11th May 2021 at 10:00
by Danni Phoenix-Kane

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Danni Phoenix-Kane shares her journey seeking an adult TS diagnosis, the support she received from organisations such as Tourettes Action and her future aspirations to research and advocate for the Adult TS community.

As a child I had always been the fidgety type, constantly moving. A repetitive rubbing of my hands occurring without any conscious awareness, only snapping into mind when someone would politely ask "Are you cold?" Initially, this was attributed to autistic stimming, however looking back and being honest with myself, I did have other involuntary signs such as winking, head nodding, and other vocalisations. A late bloomer, I attended speech therapy, and was sent to dancing, acting, and singing classes, which seemed to help massively in masking and alleviating for a time what I would eventually learn to be Tourette Syndrome.

Fast forward to today, I am a 33-year-old, who has experienced many psychological stressors that adulthood can bring. Although sad, challenging and sometimes extreme in nature, I have always tried to be strong and resilient to adversity.

However, consequently, my vocal and motor tics have now peaked to be a noticeable and constant companion.
In the past I have not sought medical attention because I feared a label. A nagging consideration, of "was it bad enough?", "am I just making it up?", "maybe it's not noticeable", "I shouldn't make a nuisance of myself," "will they believe me as an adult?". However, with increasing difficulties and the prospect of soon going back to the office after over a year of WFH, I decided to brave getting a formal diagnosis in adulthood.

My first consultation was over the phone with my GP. As I was desperately holding in the tics, my doctor told me "the NHS does not have a mechanism to diagnose Tourette Syndrome in adulthood" and dismissed my request.

Embarrassed, my heart sank. It feeds into much of the internet literature and diagnostic criteria - the childhood requirement for diagnosis. As such it penalizes adult TS/tic disorder sufferers who learn societally acceptable masking techniques, or experience latency or reactivation, making people such as myself, cower within a hidden underground community.

Luckily, before embarking on official diagnosis, I was fortunate enough to find out about the TA adult support group, which runs every Thursday and Sunday evening. And thank god I did! It allowed me to connect with fellow adults and gave me the confidence to continue in the pursuit of diagnosis. Armed with the consultant list information provided on the Tourettes Action website, I emailed my GP practice and asked in writing to be referred to an appropriate consultant. After some more phone consultations and convincing, the wheels were finally put into motion and a referral to the Department of Neurology made at my local Hospital.

The Neurology appointment was like night and day compared to the gatekeeping process. An open, reassuring conversation and a quick resolution, resulting in me finally getting the letter a week later. Getting a diagnosis for me, is not a label, but an empowerment. Having recently changed jobs during COVID, I have the confidence now to have a conversation with my new employer. I ordered an TA ID card and information cards, so that I can alert people as and when I want and need to.

I believe I am not alone in the plight to receive diagnoses for Tourette’s and other co-morbid conditions in adulthood. My experience has meant that support or understanding was not available as a child, which has now developed for those seeking childhood diagnosis today. Or perhaps, and in my case, it took time or alleviating stigma to understand and accept yourself. To understand, what support you may need, with waxing and waning symptomology.

My own diagnostic journey has inspired me to pursue a PhD exploring the interplay between perception (medical, and public), stigma and adult Tourette’s. In this vein, I hope that this research will help adult Tourette’s be increasingly understood and accommodated within the medical profession and workspace.

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