Tourette Syndrome is a neurological condition for which there is no cure. Daily life can be a huge challenge for those of us that have the disorder so you can imagine traveling would come with its own set of challenges. BUT I promise you can travel with Tourette Syndrome so make those travel plans!
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Debunking the stigma that surrounds Tourette Syndrome
An entire book could certainly be written about the stigma that surrounds Tourette Syndrome! Every single day we face the negative perceptions, stares, hateful glares, stupid jokes, bullying, and etcetera that society bestows upon us. The way we are treated in every aspect of our lives is unacceptable and exhausting.
In hopes of debunking some of the stigma surrounding Tourette Syndrome, I thought I would address some of the most common false assumptions.
Assumption one
Tourette Syndrome is a mental health condition. FALSE!!! Tourette Syndrome is a neurological health condition where neurons (nerve cells) in the brain send the wrong signals regarding movement. Or simply put by my neurologist, the brain misfires at random causing involuntary movements.
These movements can be extremely intense for some patients, to the extent of structural damage and broken bones. Furthermore, the symptoms aren’t limited to just verbal or motor tics. Patients can experience a vast, varying degree of debilitating symptoms.
Additionally, Tourette’s patients are at a high risk for a broad range of co-occurring conditions. Thus, some patients may also have co-occurring mental health conditions.
Assumption two
All Tourette’s patients blurt out cuss words and shout inappropriate remarks. FALSE!!! Coprolalia does not always co-occur with Tourette Syndrome! In fact, vocal tics for some patients are nothing more than repetitive involuntary sounds and some patients have almost no vocal tics at all. The symptoms vary so greatly from one patient to another it kind of puts a damper on the whole “stereotyping” thing. Doesn’t it?!
Assumption three
People with Tourette’s are rude or have an attitude problem. FALSE!!! I wish I had a dollar for every time I was sent to the office in school or reported to management at work for “having an attitude”. Sorry, no attitude at all. Honestly! Those rolling eyes and seemingly hateful expressions are simply a result of involuntary facial movements aka tics. The number of misunderstandings this creates can literally ruin relationships. Additionally, it can hinder educational and workplace advancement.
Assumption four
Tourette Syndrome is not a disability. FALSE!!! It is recognized by the Americans with Disabilities Act (ADA). Planning to travel with Tourette Syndrome? Know your rights! Read my post “Traveling with Handicaps and Disabilities” for more information regarding your rights as well as navigational links to valuable resources.
Tips for new travelers with Tourette Syndrome
Beginning your travel journey when you have Tourette Syndrome can be a little intimidating. It’s much easier to stay in your comfort zone when your apprehensive mind is screaming at you to avoid certain things. Sometimes fear of the unknown or your minds version of impending doom keep you from experiencing something wonderful.
Once you get over the initial “what ifs” and fear of trying something new, you’ll more than likely find yourself having the time of your life. Then, what? You find yourself yearning for more! Next thing you know, you’re a travel addict like me. Welcome to the club!
Traveling will never look the same for any two people that travel with Tourette Syndrome. What one person is comfortable with another may not be. For example, you may have an intense fear of flying and prefer to travel using other means of public transportation. A bus or a train perhaps? Inversely, you may not be able to handle any method of public transportation and prefer to travel solely by car.
It may be the fear of a specific travel method, a fear of crowds, claustrophobia, sensory issues, or any number of factors that will ultimately shape your travel style. Regardless, you will have to go through the painful process of finding out what works best for you.
The same concept applies to choosing destinations, lodging, recreational activities, etcetera. Below are some tips that just may help you on your journey.
Finding the right transportation when you travel with Tourette Syndrome
Start out slow. You know, kind of like you do when you stick the tip of your toe in the swimming pool to check the temperature of the water. Then, you decide whether or not you’re taking the plunge?!
Pick a travel method and research it. Call the company and ask questions. See what procedures they have in place for those traveling with handicaps or disabilities.
Once you have chosen a travel method, do a trial run. Take a really short trip! For example, board a city bus and ride it for a stop or two. If you don’t like it, pull the cord and get off at the next stop.
The aforementioned advice is really good, but I can’t stress how important it is to simply communicate with your transportation crew!!! They won’t bite, I promise. We recently put our youngest son on an AMTRAK train for the first time. He was understandably a little nervous, so we let the transportation crew know.
We told the ticket lady and the conductor that he was traveling by train for the first time. Additionally, we let them know that it was also his first time ever traveling solo! They were more than accommodating and were there for him the entire time. He was even upgraded from the lower level to the second deck so he could have the best view possible!
FOR SPECIAL ASSISTANCE: Make sure you fill out any forms available to help those traveling with handicaps or disabilities. For example, you can fill out this TSA Cares form for assistance through the screening process if you’re flying. Regardless the method of transportation, you’ll find most companies more than accommodating if you simply apprise them of any special needs.
Finding the right destination when you travel with Tourette Syndrome
Once you know what travel methods you feel comfortable with, you can start browsing destinations. Carefully consider what scenery will relax you the most. Perhaps you like an ocean view and the sound of waves crashing ashore. Or maybe the mountains feed your soul?!
Ask yourself which climate makes you the most comfortable. Being too hot or too cold can really exacerbate your symptoms because you simply can’t get comfortable.
Likewise, you don’t want to end up in the middle of inclement weather during what’s supposed to be a fun trip! I highly recommend thoroughly researching the weather patterns of potential destinations. It is also smart to put that destination location on your weather app so you can check it in the weeks leading up to your departure.
Focus on calmer destinations and consider booking out of season when there are less people. Reducing the chaos and noise around you will in turn reduce your Tourette’s symptoms.
Finding the right lodging when you travel with Tourette Syndrome
You would think finding the right travel method would be the most difficult part, but for some finding the right lodging is! Why? Co-occurring sensory issues!!! OMG, I am here to tell you that struggle is very real. You’ll have to take any sensory issues or special requirements into consideration when choosing where you want to stay.
I personally suggest you make yourself a sensory kit for traveling, just in case! While your sensory kit will be completely unique, the list below are some common items that may help.
- Sunglasses
- Ear plugs
- Noise cancelling ear muffs
- Super soft travel blanket (you know, the kind you can’t stop petting)
- Fidget spinner
- Playlist of your favorite music or calming sounds
- Noise cancelling ear buds
- Chap stick (favorite flavor/smell)
- Stress ball
- Favorite hard candy or chewing gum
- Hot or cold gel bead pack
- Smelly bath balls or bubble bath
- Wireless sleep headband with Bluetooth
- Sensory friendly pajamas
- Noise cancelling headphones
- Sensory friendly travel pillow
Where to book lodging
I use booking.com when booking hotel stays. It’s super easy to use and saves a ton of time. In fact, booking.com has filters so you can easily compare options and find exactly what fits your needs! Hot tubs, jetted tubs, swimming pools, fitness centers, and etcetera can be helpful aids when you travel with Tourette Syndrome.
However, not everyone will want to stay at hotels. Perhaps private vacation rentals better suit your needs. They are definitely a LOT quieter which is much easier on those of us that have sensory issues. For booking vacation rentals, I suggest VRBO! They have a good filter system as well so you can easily find what you need.
Picking the right recreational activities for your travel itinerary
There are so many free or cheap recreational activities you can add to your travel itinerary. However, when you travel with Tourette Syndrome you’ll need to choose carefully. You don’t want to add any activities to your travel itinerary that may exacerbate your symptoms.
Activities that you have never done before or have little knowledge of will require adequate research. I recommend making a list of potential activities and narrowing them down to a few you would like to try.
Please don’t try to cram too many activities into one trip! A jam-packed itinerary will cause stress at the very least and that is not the goal. Remember to give yourself plenty of time in between activities to simply relax!
Furthermore, you want to carefully consider when you schedule recreational activities. We all have our daily self-care routines which you should still stick to when traveling. Also, some of us have times during the day when we don’t function as well as we should. Make sure you keep the aforementioned in mind when creating your itinerary.
Picking the right sustenance when you travel with Tourette Syndrome
You may or may not know which foods and drinks exacerbate your symptoms. Take note of how you react to sustenance you put in your body. Choices here can mean the difference in having a pleasurable vacation or spending most of your time managing symptoms.
One of the most amazing things about traveling to new destinations is experiencing the local cuisine. It can be such a sensory pleasing experience! However, do it with caution. Make sure you know what ingredients are in the foods and drinks you wish to try. If you find out a certain drink is jam packed with caffeine and you know all too well caffeine triggers tic attacks, avoid it like the plague. There are usually a lot of options so you can easily find something else to try that will wreak less havoc on your symptoms.
Additionally, it’s important to realize, everyone is different. What increases your symptoms may have no effect on someone else’s! Unfortunately, there is no “one size fits all” list of foods and drinks to eliminate from your diet. You’ll need to make your own list of things that aggravate your symptoms and go with that. This is something that can only be achieved through trial and error as you continue learning to how to manage your symptoms.
Consumption ~ timing
Try to remain on your normal meal schedule, if at all possible. It is exactly what your body is used to. For example, if you are used to eating lunch between noon and 1, stick with that when you travel with Tourette Syndrome. Why you ask?? Let me explain!
Meals are exciting to our pleasure center and a necessary part of survival. When you eat at your regular times, your body grows accustom to that and the urgency to eat isn’t overwhelming. You tend to eat slowly, tic less, and enjoy your meal.
However, if you wait too long to eat that sense of urgency really kicks in. You become super excited and even anxious to receive your coming meal. Your brains says “OMG YOU’RE STARVING” and you must eat NOW! You end up eating too fast and excessively ticking through your entire meal.
If you’re lucky you come out unscathed. However, you probably bit your tongue (real good), caused your neck and jaws to hurt from ticking, and got choked at least once (because you have trouble swallowing anyway).
Consumption ~ portion size
You’ll want to keep your portion sizes reasonable and close to what your body is used to. Why? Because you don’t want to gorge yourself and increase your symptoms. Overeating can actually cause issues with brain function!
In addition to wreaking havoc in terms of brain function, overeating can increase fatigue and decrease motivation. You don’t want to spend your vacation lying in bed like a beached whale lacking the motivation to do anything. Afterall, you have spent good money to go on vacation so why not make the most of it. You can always overeat and lay in bed at home, right?
Additional resources you may find helpful
Traveling with Handicaps and Disabilities
Basic Safety for all Travelers
The Pligth of Travel Documentation
Protect Your Home While You’re on Vacation
Tourette Association of American
Some final thoughts when traveling with Tourette Syndrome
Always travel with your medical identification card or medical tags! You can easily conceal either so no one but emergency services will know you have a medical condition.
Join support groups, whether traveling or not! They are incredibly helpful, and you have a whole community of people to reach out to at any given time. I promise someone will be able to answer any questions you have about navigating life with Tourette Syndrome, and they will be there to lift you up when times get tough!
Also, you can always reach out to me in the comments section of this post or send me an email at [email protected]. I will do my best to respond in a timely manner.
I hope you find the information here helpful! If so, consider subscribing to my newsletter! I promise I won’t spam your inbox. Wishing you all many blessings and as always, Safe Travels!
Great info, thanks for sharing.
Thanx for reading my blog post! I truly appreciate your time.
Very thoughtful and beautifully writen post! love the photo selection.
Thanx so much Marta!