Nobody should ever have to feel ashamed of having Tourette syndrome or Tics, the people who bully, ridicule and discriminate against those with tics should be ashamed of their behaviour. Often it is better to have Tourette’s / tics than to be a person who bullies and ridicules those who have differences. Sometimes we may not want teachers or extended family members to know about our condition, but over time we can grow to embrace it and see that our condition can help us grow and can make us who we are.
Bad times don't last forever, there can be a light at the end of the tunnel. I know people who have gone through an absolute waking nightmare only to come out the other side and thrive.
Be aware of PANDAS / PANS. PANDAS is an autoimmune condition which is triggered by a Streptococcal infection where the immune system attacks part of the brain called the Basal Ganglia. This can result in motor and vocal tics, OCD, rage attacks, dilated pupils, sensory processing issues, eating problems, personality changes and more. PANS is a condition which can be triggered by both infectious and non-infectious agents and has the same sort of symptoms, PANS is a clinical diagnosis which is diagnosed using diagnostic guidelines. Not everyone has every symptom and it is often misdiagnosed as Tourette Syndrome, but the treatment for PANDAS / PANS is different from the management strategies used for Tourette Syndrome.
It can be helpful to be open-minded towards different management strategies for your condition. Some people report that diet change helps (such as eliminating food sensitivities), some people report that medication helps, some people report that supplements help etc.
It is important to read the list of possible side effects and research the side effects of medications before starting them to ensure that you can recognise any side effects in yourself if they develop and then talk to your doctor about it. Do NOT go off a medication without speaking to a doctor first. It can cause dangerous withdrawal symptoms if someone goes off of a medication too fast. It is important to ensure that your doctor is regularly checking up on you and is giving you tests that may be necessary to make sure that you are not developing negative ill effects from the medication. Doctors will often do blood tests, blood pressure tests and weight checks to see if a medication may be causing any problems.
It can help to become educated on the common co-occurring conditions so that you can rule out anything which may be causing an underlying difficulty such as mental health conditions (like anxiety, depression and OCD) Specific learning difficulties (such as dyslexia, dyscalculia, dysgraphia) and other neuro developmental conditions (such as ADHD and Autism Spectrum Condition) or sensory related conditions (such as Sensory Processing Disorder or Irlen Syndrome®)
It is good to find a specialist who is willing to listen to your experiences and doesn't judge. The second a doctor points the finger or starts blaming people, being invalidating and dismissive or refusing to look into a specific diagnosis is the time you leave and find a better doctor. Find a doctor who will work with you, not one that acts like you don’t know anything. You know yourself best.
Educate the school or workplace so that it becomes a place of inclusion and acceptance. It can be vital to educate the school so that teachers do not punish students for their tics and can be fully inclusive. It is also important for schools to be aware of the condition so that they can provide the appropriate support, schools must provide reasonable adjustments. Educating the workplace can allow staff to be understanding towards you and can allow you to access any accommodations you may need in the working environment.
Talk to others with tics so that you can make new friends and relate to others. It can be amazing to speak to others in the community and realise how much you have in common, it can be comforting to have someone to relate to. You can also share management strategies with each other and can find new ways to make things easier for you and can share information with others that may help them as well. When you meet others on the same journey, you feel less alone and know that you have someone to talk to who understands your struggles. It can help you surrender to the journey and face whatever comes because you know others are going through the same sort of thing and people have been through these struggles and have come out the other side.
Self-doubt is normal. Quite a lot of us have a little voice in our heads telling us we are faking it. This can be down to anxiety and a feeling that you need to blame yourself. A lot of ticcers experience this and if you even question for a minute that you are faking your condition it shows that you’re definitely not because if someone was faking the condition, they wouldn't have that little voice in their heads. You may also feel like you are doing it for attention, but I can assure you that you are not, as a person who was attention seeking would not worry about that. Some people worry that their tics may be psychological, but even if they were then they still wouldn’t be your fault.
Have a card or leaflet on hand that explains TS / tics, especially if you have coprolalia as this method can help you to challenge discrimination and avoid judgement. There are places online where you can order or buy cards, or even print them, but you can also make your own.
See how strong you really are and let it empower you. Look at all the things you have overcome.... You can get through anything. You are a warrior.
Having Tourette’s / tics will not make you any less successful in life, you might have to alter your life path slightly, but this can sometimes lead to even better opportunities.
Find your talents, some people with Tourette Syndrome / tics find that when they do a certain activity that they're focused on, their tics might decrease. These activities can include singing, sport, art, writing or playing an instrument. When you are absorbed in an activity that you enjoy, it can sometimes give a temporary break from the tics. This can be useful as if you are having a bad tic day or becoming stressed, then you may be able to find relief and relaxation from doing something that you enjoy. You may also find that keeping busy can help reduce the impact of mental tics as it can be used as a distraction, as long as it isn’t adding to any stress. If you care for someone with TS, it's vital to encourage their interests as it could become their passion and expertise, whilst also giving a relief from tics and anxiety.
Looking back on how far you have come can be empowering, you can see that everything you have endured has made you stronger, more resilient and wise. It sounds cliché, but it makes you who you are and once you see how strong you it has made you; you know that you can get through anything and learn from the dark times. Over time you may not feel any more resentment towards your hardships, you may embrace the struggle that you have been through because it has given you wisdom and character and it has taught you so many valuable life lessons that you couldn't have learnt any other way. Your story makes you who you are, honour your strength and know that you can share your story to give others hope and to help others accept themselves. Be the person you needed when you were at your lowest point.
It may feel uncomfortable to be misunderstood, but it's actually a privilege of sorts... You're misunderstood because you are perceived as different, but that's beautiful because we are all unique, you've just began to muster up the courage to break down your own barriers and aren't afraid to be your authentic self. You aren't even thinking outside the box anymore, you've realised that the 'box' is an illusion. You're giving the world what you've got to give, and you'll inspire others to do the same. People may laugh at your differences, but that's because they have yet to find themselves, you'll show them how. Keep being you and doing what you do, the right people will love you for who you really are. The world needs your authentic self.
Please don’t feel that you have to suppress just to make others feel comfortable with their own ableism, you cannot control your tics, but others can control their reactions to your symptoms. Suppression can have detrimental effects on your wellbeing and you don’t deserve that.
Know that having coprolalia never makes you a bad person. Coprolalia includes socially inappropriate, obscene and offensive tics. Some people worry that their coprolalia reflects some hidden part of them that could stem from subconscious judgements, but this is false. Coprolalia tics seem to happen because our brain knows that they are what we should not say in a specific situation, so our brain makes us involuntarily say it, as if our brain is trying to mortify us. Having coprolalia means nothing about you as a person. Anyone with Tourette’s / tics could develop coprolalia and it is not something that someone can choose to develop or not to develop.
If people react negatively to your tics or make nasty comments, know that it only reflects their own ignorance and misunderstanding and doesn’t mean anything about you. You cannot control your tics as they are a neurological symptom, but others can control how they react.
People with Tourette Syndrome and other conditions that can cause tics, are often kind, empathetic, wise, intelligent, unique, creative, eccentric and wonderful. You are as well.
Have the confidence to stick up for yourself, report discrimination and ask for the support you need. Trust me, it helps.
If you are a young person with Tourette’s / Tics, see if you can speak to older adults in the community as they often have a lot of wisdom and experience and some of what they say can really help you.
Know that it is okay to ask for accommodations such as extra time on assignments. Some people may worry that if they ask for extra time, they may just not be working hard enough. This is false. As someone with a neurological condition that often comes with added difficulties, you are likely working so much harder than your neurotypical peers just to function and do the work that you have been assigned. You are allowed to ask for extra time so that you can get an equal chance to your peers. Having an equal chance does not necessarily mean that everyone has the same amount of time to complete the assignment, but can mean that you are given an extension if needed so that you can complete the same amount of or same quality of work as your peers whilst you are facing many more struggles and barriers. Some people may feel like the reason they are asking for an extension is invalid, but I can assure you it most likely is valid. Struggling with motivation, struggling to focus, struggling with time-management, struggling with anxiety and intrusive thoughts, struggling with a bad bout of tics, struggling with low mood, struggling with brain fog etc are all valid reasons to ask for help, accommodations and extra time as these are symptoms that people may experience arising from various conditions. If you are struggling and feel like you need extra support and accommodations, even if you feel a little hesitant, the likelihood is that you do need the extra help and that's okay! It is brave to ask for help and if anyone see's it as a problem and judges you for it then that's their problem, not yours.
Some people are told that they will grow out of their Tourette’s / tics once they reach adulthood, however this does not always happen. Some people still have many tics way into their older adult years. For those who do see a reduction in tics, it is possible for them to reduce for a while and then return again a few years later, and it is possible for those who have a permanent reduction in tics to still struggle with co-occurring issues such as ADHD, anxiety and dyscalculia, for example. I say this because I do not want people to be given false hope as this could end up with someone having limited management strategies by the time they are an adult and they may become disappointed if they still have symptoms when they reach 18. However, saying this, it is possible for things to improve dramatically over time due to eliminating / avoiding things that trigger tics, finding treatments / management strategies that work, and developing self-acceptance, confidence and resilience. Tough times do not last forever, so being in a bad patch or having a few bad years doesn’t mean it will always be like this as there is always a way for things to improve, sometimes you just have to keep looking for what may help. It’s just that the tics and other associated symptoms and conditions often don’t magically go away on their own.
Tic freely and keep being your wonderful self!
I hope this post has been helpful!
Disclaimer: I am NOT a medical professional, this is NOT to be used as a substitute for diagnosis or treatment from a qualified physician, this is to be used for educational purposes ONLY. For medical advice, please see a medical practitioner. I do NOT claim to treat, cure or mitigate any condition.