SUPPORT, INFORMATION & AWARENESS ON TIC CONDITIONS, OCD, PANDAS / PANS AND RELATED CONDITIONS
Support for people with Tourette's
This is a page designed for those with Tourette's and Tic disorders so that people can feel confident, develop resilience, cultivate self-compassion, understand themselves and be their own advocates.
Empowerment in the Tourette's
Empowerment in the Tourette’s community:
Everyone will have a different perspective as to what empowerment means to them, for me, empowerment is where we are given the ability to claim our rights and speak up for ourselves in an inclusive environment where we are valued for who we are and not forced to conform to neurotypical standards – where we take our personal power back.
Empowerment is very important in the Tourette syndrome community as it’s a complex condition that affects everyone differently, which means that we all have unique viewpoints and experiences to share so we shouldn’t just go along with what everyone else is saying, we shouldn’t be afraid to share our own experiences or say something that may not have been said before, as there’s always someone who needs to hear what you have to say in order to feel understood and supported, when we have the courage to share our own story, we encourage others to do the same – like a ripple effect. We will also create a society that is more understanding of Tourette syndrome and other neurological conditions as people will be able to accept us for who we are and listen to us instead of making inaccurate assumptions about how the condition affects us.
Something that has empowered me is meeting others with the condition as this showed me that I’m not alone and that there are so many intelligent, kind, caring and compassionate people out there with the condition so I now know that having this condition should never stop me from following my dreams, and that the condition is part of me but doesn’t define me, but has shaped who I am as an individual.
Reading about my condition from both a scientific perspective but also from the perspective of the Tourette’s community has also been highly beneficial for me as I have realised how much I can relate to others and that has helped me to feel less alienated, and understand my condition so that I don’t get scared by it. I personally believe that it's impossible to ever fully understand Tourette’s unless you either have Tourette’s yourself or have a close loved one who does. It’s very difficult to comprehend the toll it can take on your life until you endure the impact that the condition can have on every aspect it. A professional may have training on the condition, but they only see a tiny portion of our lives but we have the lived experience 24/7. Reading about my condition has allowed me to overcome self-doubt as I can see that this condition isn’t my fault and that my experiences are normal and valid.
Do you experience self-doubt?
Those of us with Tourette syndrome may go through a phase of self-doubt. This is where we start to question ourselves and worry that we may be 'faking it' or 'not trying hard enough to stop'. Although we know inside that we can't control our symptoms as we would never put ourselves through this, we worry whether we may be 'subconsciously doing it for attention' but this is just our anxiety playing tricks on us, but sometimes we may genuinely start to believe it and feel guilty.
It's important to know that many people with Tourette's go through this phase so it isn't just you. What helped me the most when going through this was talking to other people with Tourette's both online and face to face and seeing that this feeling is relatively common among the Tourette's community.
Some people may worry that their Tourette's is actually psychological rather than neurological, but even if it was then it still wouldn't be your fault as nobody choses to have any sort of condition, whether it's neurological or not. Sometimes we may feel the need to validate ourselves to prove to ourselves that we are not doing this on purpose, you may look back on your early childhood and say 'well I went through that then so it can't be fake' or 'well I have this symptom as well so it's genuine'. I want you to know that you don't need to validate yourself as it isn't your fault regardless of what your anxiety is telling you or what anyone else thinks.
You are not faking it, this is a normal phase that many of us go through but it can be very distressing. You are not an inconvenience, you are not a burden, you are not doing this on purpose, you are not attention seeking and please don't ever feel that you need to suppress as it only makes things worse.
Once this phase passes, the other side is beautiful as you start to accept who you are and embrace your condition and use your experiences to help others and be part of a wonderful Tourette's community. You soon come to realise that this condition isn't your fault and that your tics and other symptoms are involuntary. You feel empowered to accept who you are and you gain the confidence to be able to stick up for yourself when facing ignorance or discrimination.
This will pass…
Meeting others in the Tourette's community
Meeting others in the Tourette’s community:
One of the first pieces of advice I would give to anyone starting off on their Tourette’s journey would be to connect with other people with the condition, this can be done through online forums, social media groups and local support groups.
Meeting other people with the same condition allows you to embrace who you are, you can see that there are so many interesting, insightful, kind, caring and wonderful people with TS and it shows you that having this condition doesn’t make you any less of a person and it shows you that everyone in the TS community is so unique that we shouldn’t let our condition hide who we really are, we should instead use it to empower us to learn from our experiences and not be afraid to be different.
Parents of people with Tourette syndrome can also find it incredibly useful to go to support groups and connect with others on similar journeys. When a parent of someone with Tourette’s talks to other people who have the condition, it can give an insight as to what it might be like for their child, and the other people with Tourette’s know best what has helped them in their own journey, so they can share those experiences with the parents so that they can help their own child to thrive. Parents can communicate with other parents and share the emotions that they feel dealing with this condition, as Tourette’s doesn’t just affect the individual, it often has an impact on the whole family.
Nobody can ever fully understand Tourette syndrome unless they either have it themselves or have lived with and cared for someone who has it. We are all in this together so meeting other people in the community allows you to feel understood on a deep level and gives you the ability to develop resilience to any issues you may face, because you have the support of others who have endured the same battles and you can use their expertise, and you can see that they got through this – so you can too.
It can be highly emotionally comforting to meet other people with the condition as you can share your experiences with self-doubt, anxiety, bullying, OCD and more in a completely non-judgemental environment, this gives you the ability to open up and not feel shame for what you have endured as you have others that relate to you, and sharing your experiences takes a lot of courage and you’ll inspire others to do the same.
Sometimes, when we go out in public, we can be faced with unnecessary ignorance as people may not understand the condition and may wrongly assume that it’s just ‘bad behaviour’ when it’s actually a highly misunderstood neurological condition. This misunderstanding may lead some people to become withdrawn and socially isolated but going to a support group can prevent these issues from surfacing in a variety of ways. Firstly, many local Tourette syndrome support groups hold many fun activities that people of all ages can participate in, this provides a sense of community and entertainment so that people can socialise with people who understand and are not going to judge as they have experienced similar struggles, and they know exactly how it feels to be judged. Secondly, you can talk to other Touretter’s to find out how they cope in public, and then you can implement these methods for yourself, and lastly, the connections and friendships you form with others in the TS community can hold very strong bonds as you are free to be your authentic selves and you realise that its okay to be vulnerable with these people as they want to help you and these are people who you can relate to on a deep level.
Going to a group and connecting with others with the condition also gives you a great opportunity to discuss management strategies and gather information on how to liaise with schools and the workplace from people who have first hand experience of dealing with these factors. Everyone’s experiences are different, as TS is a highly individualised condition with a diverse range of complex presentations and symptoms, but listening to other people’s experiences can offer some much needed reassurance and advice.
To find information on local support groups, you can contact a national or local Tourette syndrome organisation, or inquire about local groups on a social media group for those in the Tourette syndrome community, these groups also give you the ability to post questions about the condition and share your experiences to receive 27/7 support from those who have been there.
Light sensitivity (Visual stress and Photosensitivity) in Tourette's
Irlen® syndrome and photosensitivity in Tourette syndrome:
Irlen® syndrome (also known as visual stress) is a perceptual processing disorder associated with light sensitivity, it is relatively common in people with conditions such as Autism, ADHD, Tourette syndrome and sensory processing issues. It is an issue with the way the brain processes specific wavelengths of light, not a problem with the eyes.
Hyperactivity, anxiety, poor depth perception, restlessness, fatigue, poor math comprehension, headaches, sensory overload and difficulty focusing under bright and fluorescent lights. People will usually only have a few of the above signs and not necessarily all as it affects everyone differently.
Poor reading comprehension and slow reading speed
Visual distortions in text such as the words moving, blurring, swirling, washing out into the page, fading, having a double outline (halo effect), having large gaps between the words or white background running down the page in streams, having trouble with the contrast between the black text and white paper and the words bouncing around. Some people may not realise that the way they view text isn’t how most people view it and may only realise it once they discover they have Irlen syndrome® / visual stress.
Problems with light glare that can make it difficult to drive at night or go outside on very sunny days.
There are 2 known effective ways to manage Irlen® syndrome:
Precision tinted lenses - Some people wear specially tinted lenses in glasses that filter out the offending wavelengths of light that the individuals brain is having trouble processing, there are thousands of different tints which is why it has to be tailored to the individual, an assessment on what colour is needed can be undertaken by an Irlen® assessor or an optometrist can perform the intuitive colorimeter test. Some peoples tint may change over time. Irlen lenses are the most effective method for reducing the problems associated with this form of light sensitivity.
Coloured overlays – Some people use a coloured overlay when reading to stop the visual distortions and improve reading comprehension, speed and fluency. The overlays are often a different colour from the lenses and some people may need a double overlay. There are a few different colour overlays to chose from and it helps to test each one when reading to see which colour works best for the individual. Some people also get tinted paper to write with.
Irlen ® syndrome runs in families therefore is thought to have a genetic component. Many people with Tourette syndrome find that their tics are triggered by light sensitivity, some people find that they experience more eye tics under bright lights and Irlen® syndrome can overwhelm the brain increasing the severity of tics under lighting, therefore many people find that wearing the Irlen® lenses can reduce the tics and other associated symptoms which are exacerbated by light sensitivity.
Photosensitivity is the sensitivity to flickering, flashing and fluorescent lights. Some people with Tourette Syndrome find that their tics can be triggered by electronic screens due to the flickering, some people find that blue light blocking glasses can help or taking breaks or wearing sunglasses. Some people have severe tics in public buildings due to the harsh fluorescent lighting, wearing tinted glasses can help this, but different tints work for different people so it may take a bit of trial and error, some people may find that black / grey tinted glasses do not help, whereas amber glasses may be very helpful, for example. Some people may also tic more in environments with lots of flashing lights, such as discos or around Christmas lights for example.
What everyone with Tourette's needs to know
What everyone with Tourette’s should know:
Nobody should ever have to feel ashamed of having Tourette syndrome, the people who bully, ridicule and discriminate against those with the condition should be ashamed of their behaviour. It can be better to have Tourette's than be an ignorant person like those who feel that it's funny to degrade those with the condition.
Bad times don't last forever, there can be a light at the end of the tunnel. I have seen people get out of the hardest times, even when they thought there was no hope, there was. Some of the best days of your life are waiting ahead.
Ruling out PANDAS syndrome can allow you to see if you have PANDAS or TS, PANDAS can be treated with antibiotics and IVIG. PANDAS and Tourette's can look very similar, but ruling it out means that you can find the most effective ways of managing the condition.
Don't feel like you must manage your TS just to please others. Go where you are accepted and create an inclusive environment. If you choose to use methods to manage your condition then do it with the intention to make your own life easier.
Don't be afraid to look into new ways to manage the condition such as medication, diet changes and more as you don't know if it will work until you try it.
Read the list of side effects on the medications you may take as if you start experiencing any side effects, you should report straight back to your doctor and watch out for any signs. Also remember to ensure that you are getting the regular tests done such as heart rate, blood tests, blood pressure and weight so that you know that you are not at risk of any side effects.
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.)
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 or refusing to give you needed support or a diagnosis is the time you leave and find a better doctor.
Educate the school or workplace so that it becomes a place of inclusion and acceptance.
Talk to other people in the Tourette's community so that you can make new friends and relate to others.
You are likely working a lot harder than your neurotypical peers, when you are dealing with Tourette's and associated conditions, you put so much effort into the things you do to get the same result as your peers who don't face these struggles as you are doing the same things that they do, but with a brain that makes it a little bit harder to function. Remember to give yourself credit.
You are a good person, sometimes the tics can make you say things that you don't mean and people may get upset, but this isn't your fault as you cannot control it and there is no meaning or intention behind it - we do not choose what we tic. The rage attacks and disinhibition may also mean that you may act in ways that you usually wouldn't and some people feel a lot of remorse after a rage attack, it is important to take responsibility for your actions but also know that this is part of your condition and not your fault, you are trying your best, forgive yourself.
Know that it is okay to ask for help. Due to the struggles you may face, such as the tics, OCD, ADHD etc, school can sometimes be a little bit difficult, but you can ask for accommodations and support when you need it. People with Tourette's are also more likely to struggle with mental health problems, so know that it's okay to open up about how you feel and talk to others about mental health.
Have a card or leaflet on hand that explains TS, especially if you have coprolalia as this method can help you to challenge discrimination and avoid judgement.
See how strong you really are and let it empower you. Look at all the things you have overcome.... You can get through anything.
Having Tourette’s will not make you any less successful in life, you might have to alter your path slightly, but this can sometimes lead to even better opportunities.
Find your talents, some people with Tourette Syndrome 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 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 ticcing 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 wiser. 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 won't feel any more resentment for your hardships, you will 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 help others accept themselves. Be the person you needed when you were younger – share your testimony.
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.
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 they can control their reactions to your symptoms. Suppression can have detrimental effects on your wellbeing and you don’t deserve that.
Top Tips for Managing Tics
1) Epsom salts - Epsom salts are made of magnesium and they can be put in the bath and help relieve motor tics for some people. It can also help relax muscles to reduce muscle pain from tics and it can also detox the body and reduce inflammation. If you don't have a bath you can use a foot bath as the magnesium will still absorb into your skin, and magnesium has shown to be beneficial for some people with tics and Tourette's. Some people take magnesium orally, but some people find that the bath salts work better if people have absorption issues. 1,2,3,4
2) Remove scented products from the house and limit the use of things such as perfumes, scented sprays etc. For some people, strong smells and scented products can exacerbate tics as many people have sensory sensitivities and environmental sensitivities.
3) Chewing gum - Some people find that chewing gum can help someone manage vocal tics as it can give you the sensory input you need and can reduce the urge to tic and can be used as a sort of tic redirection, although it is important not to chew gum if you have breathing tics or any sort of tic that may make you inhale or swallow the gum, as that would be dangerous. Some people also use chew necklaces, these may not help reduce vocal tics as much as the gum usually helps as it actually goes into the mouth, goes all the way to the back and requires you to move your whole mouth, but a chew necklace can be used to help with sensory issues, redirect from certain tics such as jaw tics, teeth clenching and biting etc.
4) Tinted glasses / sunglasses - Many people with Tourette syndrome find that their tics can be exacerbated by certain types of lighting such as electronic screens due to the flickering, fluorescent lighting and bright lights. Photosensitivity is the sensitivity to flickering and flashing lights, which often includes fluorescent lights due to the fast flicker rate, this can be helped with sunglasses or glasses that are a specific tint, some people may not find relief from typical grey/black tint sunglasses, but may need a specific colour such as amber-rose for example. Irlen syndrome is also common in the Tourette's community- see above.
5) Have friends who understand to so that you can talk to them if you need support, it makes a huge difference to your confidence and self-esteem when you are around people who understand and if you are having a bad tic day or need to open up about your mental health then it always helps to have someone to speak to.
6) Educate those around you and be your own advocate - Doing a presentation to your peers can help them understand the condition and talking about the impact it has on people can make them see that the condition isn't a joke.
7) See if you can get a card that explains the condition, this can help you explain it to people if needed when out in public and you can also show it to substitute teachers and people who don't understand.
8) Find your trigger foods and avoid the - Some people have food sensitivities which mean that when certain foods are consumed, they can trigger tics and other symptoms such as rage attacks, sometimes a few hours after consumption. Common trigger foods include gluten, dairy, corn, nightshade vegetables, citrus fruits, salicylates, egg, chicken, sugar, food dyes, sweeteners, cocoa and more. Everyone has different trigger foods so it is important to find which ones affect you. Some people may notice a slight reduction of symptoms after dietary changes, whilst others may have a dramatic decrease in symptoms.
9) Find a hobby that decreases your tics - Some people find that doing something that they enjoy and that absorbs them reduces their tics temporarily and can also help someone cope with co-occuring issues. These hobbies could include playing a musical instrument, singing, making clay models, painting, writing poetry, solving puzzles, watching movies, playing sport etc.
10) Use a weighted blanket - Some people have weighted blankets or weighted lap pads to provide deep pressure. This can help balance someone's proprioceptive sense (sense of where the individual is in space) as well as be calming for some people as it can feel like they are being hugged. Some people find that this reduces anxiety, reduces tics and helps someone sleep, however some people may find it uncomfortable and constricting.
11) Use padded gloves for tics where you hit yourself - some tics can cause you to hit yourself and this can hurt and cause bruising and may cause lumps to form, padded gloves or fingerless boxing gloves can help with this to soften the blow and prevent injury.
12) Heated products - heated neck pillows could help reduce pain and muscle tension from neck tics. Hot water bottles could relieve pain from muscle clenching tics.
13) Humour - It's not acceptable for people to laugh AT us if they can see that we are struggling, but laughing WITH us can be helpful if we tic something that is genuinely funny, as it can help release tension and help us not take things too seriously. Sometimes, you may feel embarrassed by certain tics, but seeing humour in the condition can allow you to laugh about it so that you don't get too upset about it.
14) Tie a pen to your wrist if you throw pens as a tic, this can prevent it from flying across the room, or you could use a word processer and type things instead.