‘I had to wear adult diapers. ‘Do you realize how stupid you look?’ He was mimicking my tics in front of the class.’: Young woman with Tourette’s Syndrome finally finds help, ‘I got my quality of life back’

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“Imagine what it’s like to suddenly wake up and have your life changed forever – being bombarded by rituals, compulsions, spasmodic contortions and losing the ability to do the simplest of daily tasks. This is what happened to me at the age of 8. My parents had to cater to my every need because my independence ceased to exist, and we had no idea what was happening. My rituals were time-consuming, nonsensical, and debilitating, to say the least. I would spend hours in the bathroom, procrastinating the rituals as I knew they would leave me utterly exhausted. I would have to painfully clench my stomach, wash my hands until they were red and raw, and dry my hands in very specific number sequences.

This whole routine was incredibly distressing for the entire family as I would have to be dragged out of the bathroom kicking and screaming. This could continue until around 3 a.m., leaving me and my parents sleep-deprived and frustrated, and then waking up to the same turmoil the next day. We eventually had to use public restrooms every evening to prevent me from being late to bed, as I only had the ability to suppress these symptoms in public. Suppression comes with a price. It is highly uncomfortable and can make the symptoms come out worse later – known as rebounds. Anything held in will accumulate until it explodes, and this can be dangerous to people with severe symptoms.

When coming home from school, I would spend up to an hour straightening my shoes, trying to get them ‘just right.’ If they were straight, then they were ‘too perfect’ but if they were wonky, they ‘weren’t straight enough.’ I had myself stuck in this vicious cycle where it was impossible for me to win. The frustration would build up from dealing with these rituals and explode as violent rage attacks. These attacks consisted of me losing all control over my rational thinking and actions and suddenly transforming into someone who couldn’t help but kick, scream, hit, shout, bite, swear and lash out. I would’ve done anything to stop these horrific attacks as it almost looked as if I was ‘possessed’ by this affliction. My family says the rage attacks were one of the hardest parts of this ordeal to deal with as their once sweet little girl was now virtually unrecognizable due to these horrifying episodes.

Courtesy of Romy Worthington

There were times when I smashed my entire bedroom up and left obscenities written down the walls. My mum would go into my bedroom once she’d eventually got me to school and she would look at all the toys I could no longer play with and cry because I had my childhood stolen away by this condition like a thief.

Courtesy of Romy Worthington

My parents took on the duty of dressing me in the morning before school. I lost the ability to do it myself. This continued up until my pre-teen years, and it was very hard for me to accept I was almost a teenager, yet I couldn’t attend to my own daily living needs. My mum also had to assist me when brushing my teeth as the bristles felt like sandpaper against my gums and the water on my hands would cause me distress. My anxiety got so severe my dad had to sleep on the floor next to my bed every night because I couldn’t manage to sleep in a room on my own. He would watch as I drifted off to sleep to make sure I was okay. My extremities would still be jerking when my mind was no longer awake.

Courtesy of Romy Worthington

We were referred to child and adolescent mental health services where I received the diagnosis of Obsessive Compulsive Disorder and was prescribed an anti-depressant medication in an effort to reduce the symptoms. Unfortunately, it didn’t seem to be effective in improving my ability to do daily tasks or reducing the compulsions, but it helped my anxiety to such an extent I started speaking up more in school. Prior to this, I was incredibly timid.

I was referred to many years’ worth of cognitive behavioral therapy sessions, but unfortunately, they were ineffective. We realized  I did not have the classic form of OCD, which is characterized by intrusive thoughts and compulsions that are fueled by fear. I had Tourettic OCD, which is where my rituals and compulsions are preceded by physical sensations – in my case, phantom tics which were out of body sensations which I labeled ‘sticky magic,’ as I was too young to articulate it at the time. These phantom tics felt like I was a puppet on a string, and it felt like my limbs were being pulled by elastic bands to preform these compulsions. One of my phantom tics consisted of me jumping over a particular area of the living room floor as I felt like there was an invisible barrier blocking my way, but when trying to explain this bizarre symptom to therapists and doctors, they just explained I was probably just concealing my intrusive thoughts. In some cases, this does happen, but my compulsions were fueled by premonitory urges rather than thoughts or emotions, therefore CBT couldn’t get to the root of the matter in my case.

Courtesy of Romy Worthington

We faced a lot of hardship and misunderstanding from doctors. When my mom explained why she believed I had Tourette’s, my psychiatrist responded in a very condescending way, trying to prove I don’t have it. When I brought it up, I was told, ‘A 12-year-old shouldn’t know what it is.’ Unfortunately, this misunderstanding prevented me from getting an accurate diagnosis straight away. My involuntary rage attacks were put down to ‘behavioral issues’ and ‘bad parenting,’ which led to my parents being sent to family counseling for something which wasn’t their fault. I was left with my self-esteem in shatters, believing I was a naughty kid and frustrated at myself. There were times when I would state I felt ‘stupid’ because no matter how much I tried, I couldn’t stop these things. I was repeatedly told I would ‘grow out of it,’ but this isn’t entirely accurate, as children with Tourette syndrome grow up to be adults with Tourette syndrome. The lack of adult representation means adults may not get the support they need and when an individual reaches their 18th birthday and still tic, they could be disappointed if they were not informed how the condition can impact someone beyond the childhood years. The misconception tics just affect children is harmful to our community.

Courtesy of Romy Worthington

Unfortunately, the misunderstanding we faced from doctors became serious when my psychiatrist threatened to put me in a care home for my rage attacks. This exacerbated my anxiety and made things worse, but I do forgive them because unfortunately, it’s not uncommon for certain doctors not to be informed on the condition. They may not understand the wide array of symptoms which can be attributed to this diagnosis. My parents would research for hours on end to try and figure out what disorder had taken their child hostage, watching videos, looking at articles, and reading books to find ways to support me and give me a quality of life. It took seven years to receive the formal diagnosis of Tourette syndrome, but it was a Godsend, as I was able to receive the support I needed in school like half days, extra time on exams, and a word processor.

Due to the lack of understanding of Tourette syndrome in society and being presented as a joke, some of us become accustomed to facing atrocious levels of bullying and discrimination. During my first year of secondary school, I remember sitting at the tables for lunch and having food thrown at me from the other side of the room. In my design technology class, another student busted open the classroom doors and started mimicking my tics in front of the entire class. When out shopping with my friends, I was once stopped by a man who shouted, ‘Do you realize how stupid you look?’ When I explained I have Tourette syndrome, I was accused of faking it. Many of us in the Tourette’s community have faced this sort of harsh treatment and this needs to change. I hope the next generation of Tourettic individuals live in a world where they are accepted for who they are and given the support and accommodations they need to thrive in an inclusive society.

Courtesy of Romy Worthington

At the age of 12, I was finally placed on a medication to try and manage my tics. Unfortunately, the medication triggered a cascade of complex neuropsychiatric symptoms which led to a week of anguish. I descended into a whirlpool of anxiety where I couldn’t sleep and suffered inconsolable crying. I had extreme light sensitivity, where I had to wear sunglasses just to look at the television, and developed numbness down one side of my body. We realized this strange collection of symptoms had arisen from the green food dye in the medication. I have a food dye sensitivity, which is common in the TS community and it can inflame the brain and lead to neuropsychiatric symptoms. Food dyes were one of the biggest triggers for my rage attacks. I remember standing in the bathroom one evening, begging my mum to tell me, ‘Why is God punishing me?’ thinking I had done something wrong to deserve this.

Courtesy of Romy Worthington

Throughout the years I have had a plethora of different tics. Some episodes would become debilitating to the point where I would be pinned to the floor by these strong sensations and weep, wondering why I couldn’t get up, ending up in a puddle on the floor from my stomach clenching and bladder tics. I had to spend most of my time wearing adult diapers. My face would burn up from using up all of my energy and I felt like a fish that had been dragged out of water, twisting, contorting, and squirming. At times, my breathing would become erratic and it felt as if I couldn’t satisfy the breath. I would inhale, exhale, and hold my breath in bizarre patterns, completely unable to stop, to the point where my fingers were cold and numb and I would become disoriented from the breathing tics.

Courtesy of Romy Worthington

Going out in public was like a constant risk assessment, as my impulsive urges would creep up out of nowhere. I would have constant worries swirling around my mind, such as, ‘Will I hit out at someone? Will I collapse on the ground? Will I throw something at someone?’ I would make a mental note of all the potential dangers around and try to avoid anything that could potentially trigger a dangerous tic, but there have been times where it was too late. In my chemistry class, I smashed a glass flask onto a desk, breaking it into tiny shards. My school’s special educational needs coordinator called me and my dad into a meeting and explained they thought it would be beneficial for me to be referred to a medical pupil referral unit/SEN school. I was finding it nearly impossible to function in school, even with all of the support they provided for me, which I am incredibly thankful for because not everyone gets the support they require. I remember bawling my eyes out in the evenings because I didn’t know if I could face another day at school. My tics were completely unpredictable and I didn’t know how to cope. One of the most prominent incidents was when I had to be taken out of the pupil support center in a wheelchair as my tics had hindered my ability to walk. I was always worried this would happen again.

I was blessed enough to attend a Tourette’s weekender event which ran workshops, including one on tic triggers. I learned how some peoples’ symptoms can be triggered by certain sensory input, allergens, and food sensitivities, and eliminating these triggering factors can lead to a reduction in symptoms for a percentage of individuals. I found I was experiencing photosensitivity, which is the aversion to flickering, flashing, and fluorescent lights. This is why my tics always erupted in public buildings. I was able to manage this with amber-rose tinted glasses which calmed my neurological response. Different colored lenses work for different people, as it has to be tailored to the individual. The biggest reduction in my symptoms was after cutting out dairy. This is my main allergen that triggers neuroinflammation and was the main culprit in fueling my tics and other complex symptoms.

Courtesy of Romy Worthington

After this, the transformation was dramatic. I had my quality of life back and I was no longer plagued by these symptoms. I was able to come off my anti-psychotic medication, which we thought would never happen, and I no longer needed to be referred to the medical pupil referral unit so I could stay in school with my friends. I had my life back, which was a miracle to me. I was able to complete my GCSE’s and get into further education to do what I love. When I received my GCSE results, the SENCO responded, ‘This is amazing, coming from the girl who just a year ago couldn’t hold a pen!’ I never thought I’d get to this point, so I am eternally grateful. I want to show there is always hope.”

Courtesy of Romy Worthington

This story was submitted to Love What Matters by Romy Worthington from Buckinghamshire, UK. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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