Trying to get a diagnosis of a specific tic disorder can be a challenge, but so can living with tics with or without a diagnosis. It isn’t just with tic disorders that having or not having a diagnosis can open or close particular doors to support. So what are the pros and cons of a diagnosis?
We asked some of our steering group what their thoughts were on getting a diagnosis, living with tics on a daily basis, and if they were able to suppress them to any extent. The main pro our steering group all shared was that having a diagnosis helped them understand themselves better, and in many cases, allowed them to access some level of support.
“Having a diagnosis was, for me, a godsend! After some research into the condition, I suddenly had an explanation for so many facets of my personality.
On the one hand, I was shown that Tourette’s could account for a lot of the things I take most pride in. My empathy (towards loved ones, strangers, all living things really), perfectionism at work making me better at my job and even how fiercely I love all those close to me.
On the other hand, it gave me a reason for some of the parts of me I’d rather do without.
It was good to have a reason for my tics, though I wouldn’t say it helped with them at all.
The biggest help was having a reason for my “rages”. Having something to blame, other than myself, took the pressure off. The guilt I felt over these outbursts melted away, making it infinitely easier to control them. It was an almost immediate change. I still have bouts of anger like before, but they are so much fewer and last so much less time and I find it a LOT easier to apologise for them.
From the point of view of a parent, my son’s diagnosis was also a big positive.
Because of it, my wife and I have done the research and learnt so much that we are now able to help others with less experience than us (which feels bloody fantastic to an unapologetic empath like me). My son gets all the help he needs at school and he feels completely free to be open about it with others. All his friends and family know and understand his tics and he, at the age of 12, already fully understands things about himself that I didn’t have the opportunity to start learning until I was in my 30’s.
All in all, I can’t think of a single downside to diagnosis, either for me, my son or those close to us.”
As much as a diagnosis can open doors to support in school and the workplace, not everyone is so understanding. Unfortunately, sometimes a specific diagnosis, like Tourette’s, Autism or ADHD, can come with some stigma and misunderstanding attached to the label. So much so, that some professionals are reluctant to give a formal diagnosis. However, with-holding a diagnosis this can lead to difficulty accessing the correct support, self-doubt, and feeling misunderstood or unheard.
“Pros: understanding myself, people understanding me. Explanation for others.
Cons: people thinking it’s fake, feeling obviously different from others, school being difficult.”
Misunderstanding is often a result of media misrepresentation, leading to people believing that all people with Tourette’s have large dramatic movements and swearing tics. When tics are more subtle or are being suppressed, unfortunately, it can lead to a level of disbelief in some people. This is generally not more than a lack of education, and some training and support can help people to understand better how tic disorders and co-occurring conditions can affect an individual. How an individual is affected is a crucial point to take away, because every individual will present differently.
“I suppress most days. I find that if I start letting tics out, they get out of control, and then I cannot stop them, so when I am around people I suppress.”
Knowing what is and isn’t a tic can be difficult for on-lookers to understand, especially when they don’t have much knowledge on the subject of tics. Adding to this, disinhibited behaviour which is also a symptom that is commonly seen alongside Tourette’s, and it can be challenging to know how best to help. Disinhibition is the inability to consistently apply the brain breaks that stop inappropriate behaviour; even when an individual might know better, they still can't stop the behaviour.
“I can’t suppress by choice, but my body naturally will stop ticcing in dangerous situations, eg holding a knife. But my teachers will question whether things are actually tics”
What does a diagnosis give you? With a diagnosis, you are more likely to be able to access specific support and accommodations, like being referred to specialist tics/Tourette's clinics (yes, the waiting lists are unfortunately quite long); it can help when applying for things like EHC Plans, PIP, Access to work, and many other accommodations. Knowing what is going on in your body, can also decrease anxiety surrounding tics, boost self-confidence in yourself, and reduce the chances of declining mental health later in life. Having a diagnosis may remove some of the internal pressure to either consciously or subconsciously suppress tics when in public or around groups of people, allowing you/your child to be your/their authentic self. Self-acceptance is key to improving or maintaining mental wellbeing.
Without a diagnosis, sometimes we can constantly feel the need to research symptoms and question ourselves. I know even with a diagnosis, there are times I have questioned if I really just did something or if it was a tic, even though I know internally that it was a tic. By not having a diagnosis, it can be harder to access reasonable adjustments such as extended time in exams, EHC Plans, having accommodations at work etc... When you don’t understand what’s going on in your own body, self-doubt it can lead to feelings of self doubt, low self-esteem and anxiety, which can be compounded by a lack of understanding from others.
So, is having the label of Tourette’s, another tic disorder, or condition a positive or a negative? We held a poll in our members-only and Facebook members-only group, 100% of the votes were that they felt a diagnosis had overall been a positive thing for them. The positives we have identified are: increased understanding of yourself and from others, feeling heard and validated, being able to be your authentic self, increased self-confidence, and access to support. The negatives we identified were: misunderstanding due to lack of awareness, stigma, and the possibility of misdiagnosis. Whether you feel a diagnosis would be helpful to you/your child is a personal decision, we are here to support you with or without a diagnosis.
Written by Ellen and approved by Sarah