Fighting for a diagnosis: Is it worth it?

After a long, long pause, I am excited to be back here with a new blog entry! The end of 2020 was not kind to my mental health, and it took a lot of patience and help that lead me to addressing the situation as needed. Anyway, this post isn’t about me; it’s about the Tourette’s community. Without further ado, lets dig in!

   As a member and viewer of many TS related social media groups, I find that a lot of people ask the question if it is worth going through the hoops to get a proper diagnoses.

   And I totally get it.

   Medical bills are daunting. Medical professionals can be thick-headed and getting a referral to a proper specialist can be like trying to explain physics to a cow. And then, if you are lucky enough to get to the end of the road and get a proper diagnosis, the doctor then tells you there is no cure for TS. In fact, there aren’t even on label medications for it!

   So then why are people like myself touting that it’s worth it? Well, let me lay out a few points.

• Peace of mind – When I was first diagnosed at the age of 12, it was like a huge weight lifted off my shoulders. People in my family and school could no longer look at me and tell me I was just faking it for attention. Or that it was just habits. It had a name, and at least I knew it wasn’t just something I had control over.
• Treatment has come a long way – When I was first diagnosed, there were only a few off-label medications used to treat TS, and they often carried grave side effects. While many medications used to treat TS today still have disruptive side effects, there is a much wider range to try. And if you decided (like myself) not to go with any of them, then that’s totally ok! At least the options are there if needed.
• Community – Being able to go to a page where other people are dealing with something as unpredictable and infuriating as TS can be is a great source of decompression. Even if it’s just going on to make a post saying how much TS just plain sucks some days, you will find sympathizers. You will find others who will offer tips and tricks they learned along the way to not only help cope with tics themselves, but the shame and other feelings involved.

So to summarize, do I think getting diagnosed with something that has no cure is still worth it?

    ABSOLUTELY!

I do hope if you are struggling to find the proper diagnosis for your tic disorder, that you are granted the strength and patience to carry forward. There is some light at the end of this tunnel!

Best wishes!

A new type of mask debate

 

And we’re back! Thanks for checking in after the long pause. I hope you are all coping and hanging in there with the current pandemic situation.

If you are a member of any of the Tourette social media communities, you may have seen an Amazon listed product making the rounds that is bluntly titled “Tourettes Mask for Outbursts”

For those not familiar with it, you can type that term verbatim in the amazon search. The product looks like a rubber sock with a widened piece that is designed to go over the mouth. The purpose is to silence vocal tics and outbursts, and has a headband that holds it that you can buy separately for long term use.

As it turns out…I have A LOT to say about this!

It made my stomach drop to see an item being so freely sold that would mute someone with Tourettes syndrome. On the surface, this is a product used to mute tics instead of create an environment of acceptance. While I understand a free-thinking adult using this in a professional setting to minimize disruptions, the fact that this item is listed on Amazon with no medical research to back up its results really bothers me.

There has been a general sense of outrage across many people living with TS because it shows how far we really are from acceptance. The fact alone that someone even felt the need to create this tells you all you need to know. When you list a product so unstudied, into a community where there is so much misunderstanding, you are breeding more issues than you could ever be solving.

All I could think of is someone buying this and telling their child or family member that they should be using it. The horror that person would feel realizing that someone would rather introduce something to make their life easier than try and understand and accept your life and condition.

I’ve lived through the horror of being told I needed to go to another room if I was going to “make those noises.”. You never fully recover from that. It is always something that sits in the back of your mind, and in my case, made me want to fight for awareness so much harder.

Again, if someone choses to use this, I am not here to tell you not to. It isn’t my place to tell anyone how to cope with their TS. We all have it differently, and we all need different things to get through our day to day lives. What worries me is the appearance of an item like this being listed to just anyone who could use this to do more harm than good in the community. If this is something that they decide to medically study and back in the future, I would hope you could only get it through your medical provider.

If you’re as bothered by this product as I am, you can leave a one-star review and ask Amazon to consider removing it until it is cleared by medical professionals.

I’d love to hear your thoughts on this! Please feel free to comment. Until we meet again, please stay safe

TS Awareness month: A note

As always, I’d like to thank you all for continuing to follow this page and support this cause. While this blog is a hub of information and perspective, your support is the vessel that carries it to the world.

Today’s blog revolves around an exciting subject: Tourette’s Awareness Month!

For those who are not familiar with it, Tourette’s Awareness Month starts on May 15^th, and runs through June 15^th. It also coincides with this year’s Tourette’s Association of America’s annual conference, which is being held virtually due to the COVID-19 outbreak. I highly suggest following their social media accounts for updates and insights from the event, as it is always vastly informative!

Ok, back to the topic at hand. Tourette’s Awareness month is an incredibly inspiring time for me as someone with TS. It is sort of a gentle push into being vocal about my experiences and firsthand knowledge, and gives me a reason to blast peoples timelines with such.

But it isn’t about me. It isn’t about anyone with TS, really.

It’s about those without it.

Tourette’s awareness month is about educating the part of the population who do not know what Tourette Syndrome is. It’s for the population who know what it is only for its stereotypes. It’s for those who might know about the surface issues of TS, but are unaware of the comorbidities, and the complications those cause for people like me who live with the disorder.

So how can those reading this without TS help aid in this movement without firsthand experience?

It’s as easy as sharing a blog like this. Or taking just a moment to go to Tourette.org and explore their tools and info resources. It could also be as easy as making a small donation and sharing that info through your socials. Even if just one other person see’s/discovers the truth about what TS is and isn’t, that is one more person who didn’t know about it yesterday.

The Tourette’s community has come a long way in their fight against misinformation and spreading the word about not just what TS is, but how it effects one’s life in every sense.

I have faith that one day we might live in a world where TS isn’t known as the swearing disease.

Or that kids are not teased for having TS and the tic’s they can’t control.

Or that one day the term Tourette’s will be as well known and studied as other diseases that garner (and deserve) instant recognition.

Until that day, we push forward.

Happy TS Awareness month. Be safe!

Honesty: A TS Coming out journey

Hello, and thank you all for your continued support of this blog and this cause!

I am writing this on giving Tuesday 2020 as not only another unique entry to the page, but to help drum up more interest and possibly more donations for the Tourette’s Association of America! If you have not had a chance to check out their wonderful website, I highly recommend doing so. Whether you have TS, know and love someone who does, or are simply curious about the disorder, they have resources for EVERYONE! You can visit the website, and make donations here: Tourette’s Association of America

Today’s blog revolves around something so simple: Being honest.

I mean, it sounds simple enough right? Yet for me, being honest about my Tourette’s was not only a long journey, but was a journey of different motives and dialouge along the way.

For most of my life, I never told anyone about my TS unless approached. This started to change in early adulthood after graduating high school. I started to open up more about having TS, but not for the reasons most might suspect.

TS was not something at that time in my life I was proud of. I hated that I had something I did nothing wrong to be hindered by, and that it was not becoming less noticeable as the doctors said happens with a lot of patients after adolescents.  Faced with this reality, I fell into a spiral of self-depreciation and only told people about my TS as a way to push them away. I figured if I hated it, so would they, and we might as well just get it out of the way and not bother trying to pretend we could have normal relationships.  My dialogue was fueled with vulnerability and despair, and it wasn’t until I met my husband that this started to change.

More than ready to resign myself to the fact that I’d never find love, when he approached me to date, I told him flat out about my TS and expected him leave. But he didn’t, and the only thing that had changed was I really didn’t want him to walk away. When I spoke to him on the issue, my dialogue and tone changed despite the same fear I had that he’d end up hating it, or me, and it opened up a whole new world.

It took many more years to become more open about my TS in the way I am today, but it was something I was actively working at instead of giving up on. At 25 I finally decided to make my having TS public information to everyone through Facebook and was overwhelmed by the support and kind words offered.  Now 30 years old, I am proud to say I am an adult with Tourette’s, and I have achieved so many goals despite of it.

I guess the point of all this is, is that coming to terms with TS is just like any other diagnoses. There is often fear, anger, and even shame. Opening up about having TS isn’t something you should feel pressured to do until you are ready. Don’t let what can be perceived as bravery from others who do speak about it freely make you feel like you have to go out and do the same. Just keep in mind that the way you feel about it today can change tomorrow. The way you express those feeling can change tomorrow. You’ll live and you’ll learn. You’ll find your own unique language with it, and just as TS is ever changing, so are we as humans

This is why we fight… (Plus COVID-19 resources)

First and foremost, I hope you are all staying safe and sound at home if you can. For those workers out there in essential businesses, I thank you for your bravery and grit in these trying times.

As the COVID-19 pandemic has swept across the globe, there have been many implications on people form all walks of life. Whether it be an overwhelming fear being a high risk individual, or being an anxious busy body like myself who is climbing the walls at home; We are all in this together! Especially us in the TS community who may be coming under suspicion due to coughing tics or are dealing with the strain of comorbidities.

I wanted to be sure that before I dig into the reason behind this blog that I directed anyone who needs it to this wonderful resource page set up by the Tourettes Association of America. There are webinars related to the TS community related to COVID-19, as well as ID cards that you can carry with you to help those around you quiet their fears and educate them about what it is to have Tourettes. You can find these tings and more here:

COVID-19 Resources for Tourette Syndrome

With that said, the reason for this blog is related to the wealth of information we are seeing spread about this virus through all forms of media.

I am sure you have all seen a post or two that made you shake your head and think “Who on earth really believes that is true?” The amount of fraudulent information out there is baffling and disheartening because whether we believe it or not, there are people out there who will take it as gospel. They then will spread this information to friends and family who will do so to their kin and so on. For as frustrating as it is, I am starting to see the how and why behind the continued misinformation and stereotypes that have been formed about Tourettes.

Coronavirus is going through now what we with Tourettes have been going through for DECADES!

All it takes is one person to spread misinformation at a rate faster than any virus. This has all reminded me of why I fight so hard for Tourette’s awareness, and why our job will truly never be done.

There will always be misinformed individuals in the world who spread false narratives, and not always with malice. The more we make our voices heard, the less impactful and shorter journey those fallacies will travel before they are corrected.

I felt this was an important message to share because if you didn’t believe that awareness was important before, we are seeing firsthand evidence that it is now. The fight for truth is more important than ever. I urge you to join in.

The river and the rocks

Once again thank you all for coming back after a long delay. As I mentioned before, I do not wish to blog just to say I stayed on a schedule. I want these posts to read as genuine as they are informative and conjuring up fake emotion or going through the motions isn’t productive for readers or this cause.

Without further ado, let’s get into this post’s topic.

It’s kind of crazy how the brain can correlate two unrelated things, isn’t it? Things that have little to no meaning to someone else might move you to tears such as a song or movie. Or maybe even a smell. It’s completely unrelated, but it brings up something that you can’t help but feel.

So, what am I getting at here? I’m getting at my brains ability to relate things to TS that are completely unrelated. In particular; Large rocks in a river.

So often I see people discussing “tic attacks” or the defeating feeling of a rough tic day on social forums. It got me thinking about how unpredictable these events can be, and how it seems like TS is a constant flow of motion that suddenly bumps into something and devolves into a tailspin before going back to its normal motion. It instantly reminded me of a river.

Tourette’s is the current that flows along our surface as individuals. In my case, it is often consistent, and I can maneuver beneath it without too much issue.

And then that river hits a large rock. It spins around and around and pulls me off my desired path, making me choose to go one way or another to try and find some sort of tranquility again. Whether we are dealing with a tic attack, or having a rough day with TS in general, it can often cause us to have to make a choice such as to isolate, miss out on time with friends and loved ones, or to medicate until we get around the rock and are able to maneuver at a normal pace and direction.

Not to mention the ability for something external to cause the river to rise or race. Stress can be like the rain that makes it harder to keep not only tics, but other comorbidities down. Even in my case, stark silence can act as the wind and cause my tic patterns to change direction as I become more self-consciousness.

However, your river ebbs and flows, it’s important to remember that what comes around, often goes right back out around. Much like nature, there is no way of truly knowing how TS will affect us on any given day. We do our best to predict it and prepare, but like most of life, it is full of surprises. It sure makes you cherish the sunshine a whole lot more, doesn’t it?

Thanks again for sticking around, and I hope you are all having an outrageously good 2020!

My TS Christmas wish list

As always, I want to start with thanking all of you who have supported this blog and cause! Without you, this whole movement would fade away into dead air.

So, I didn’t do a thanksgiving themed post because I’m just not that clever, but I did want to do one for Christmas! If I decided to break out some fancy Christmas paper and a pen and write a letter to the north pole, this would be what it’d look like;

Dear Tourette’s Santa (I mean, it could be a thing.)

As an adult with TS, I do not write to you for material things. However, there are a few things that money can’t buy or create, and I was hoping you could work your Santa magic to make the following happen:

1: Not to feel guilty for not wanting to be touched/social etc. There are day’s where everything hurts because of tics and I don’t want even want to be hugged. There are days where being touched almost always sets off a physical tic and I feel horrible enough without feeling guilty as well. I’m not proposing to never be shown affection of course, but I am proposing that when I do not respond favorably that I be given some basic understanding.

2: For the love of pizza, can these celebrities stop using Tourette’s as a punch line? I feel like in the age of the internet this is even more unacceptable. A 5 second search will turn up that TS is not just the “Swearing disease”. Besides, it’s inappropriate to use any illness as a way to insult someone if I’m being honest.

3: For anyone who has been cast out or bullied for their TS to find the strength to love themselves through it.

4: OK, this last one is probably asking for A LOT, but if we could get a new form of medication directly for TS that doesn’t have god awful side effects…that’d be great. I had heard the rumors of medications being almost unbearable for many patients who tried them but always held out hope that this was over dramatized. This year when i began to seek out medications for TS, I found that hope shattered. I’m not going to go so far as to ask for a cure. TS is part of my being and I would probably be a little lost without it being there. But…a medication to at least help shut it down so people can at least live a somewhat normal life without trading in their mental capabilities, body weight, etc. only seems fair.

So, whats on your TS wish list? I’d love to hear from you all!

Wishing you all a wonderful holiday, and a happy new year!

Awkwardness for the sake of truthfulness

Hello everyone! I hope you had a wonderful Thanksgiving! I am thankful for all for you who continue to support this blog, and this cause! In fact, because of your support, I can now confirm that my recent blog: Tourette’s is a pain. Literally. was chosen to be featured in the Tourette’s Association of american newsletter! I will provide some photos when my copy is shipped to me.

This blog post is dedicated to another step in not only becoming more comfortable with my TS, but with spreading awareness and recognition of all the little things that the disorder hinders in some way.

I feel like having TS has happened in or four different phases theough my life:

There was the phase of not knowing what it was and being accused of  lying about my inability to not perform a tic.

Then came the “I’m just gonna pretend this doesn’t exist and hide so I don’t have to admit it.” phase.

Then came the realizing that this thing isn’t going to magically disappear and that I’m now an adult who can’t hide all day, so I may as well get comfortable in my skin phase.  It was the phase that allowed me realize this doesn’t have to be any more of a hinder than it is on the surface, and eventually lead to me creating this blog.

Where I am at currently, is a phase of comfort that allows me to admit that, while I refuse to let my TS hinder me from living as normal of a life as I can, it does have it’s role in my everyday life that I’m tired of making excuses for. When someone questions why I do/do not do something, or why I may have an unusual anxiety over something that relates to my having Tourette’s,  I’m doing my best to answer with blunt honesty. It’s not always easy, and I’m not always perfect with it because I have conditioned myself for years to make said excuses. I was afraid of how people would look at me, or pass my true feelings off as an excuse in itself.

So why now? I’m not really sure what the answer to that is, but i have a theory that as I get older I realize more how damaging it is to cover up these truths. And admitting them after making excuses for so long has been met with some blank stares, but I genuinely think that is because no one knows how they should respond. By taking this step, i hope others will follow to make this dialogue easier and more commonplace.

Tourette’s, like many diseases and disorders, isn’t always debilitating. It isn’t always even physically present. But that doesn’t mean it isn’t there, and that it doesn’t have an impact always. It’s time to stop letting people get away with thinking so.

It’s awkward, but necessary.

 

 

They can’t control it, but you can/should control your reactions.

And we’re back! Thank you to those who have continued to support this blog. As I mentioned before, I do not want to come here and post a blog just to say I did, or stay on some sort of schedule. I feel like that really bogs down the meaning of this blog. With that said, you may see these long periods of time between posts.

I am posting today because I have seen a disgusting amount of posts on social media platforms regarding the way family members, friends, and even spouses handle living with someone with TS. It not only breaks my heart, but lights a particular fire in me that I can not sit by and idly let burn on its own.

Disclaimer: I am not here to tell someone how to parent their child, etc. I am simply here to provide you an internal view of how certain actions effect the person in your life with Tourette’s. I can only speak form my personal experience, and the reactions I see from my peers in the TS community. This might get a little rant-ish, so bear with me.

Let’s get this out of the way: Living with someone with Tourette’s is not always an easy thing. If anyone understands that to the fullest, it is we who have the disorder. Day to day things are always changing, whether it be our tics or how we are handling them.

With that in mind, it is ON NO OCCASION ok to punish someone who has TS for having TS related symptoms or comorbidities! NEVER!

I saw a post the other day that almost made me sick to my stomach about how an individual said she found the cure to her child’s tics by “accidentally” breaking his Xbox so he can’t play his games any longer. It was clear she was implying if the child stopped ticing, then she would the repair or buy him a new one. This is one of many posts I have seen from individuals who punish/shun people with TS to other rooms and so on.

Let me explain to you why this punishment tactic seems like it works, but it actually doesn’t. You are now telling that person/child/etc. that on top of suppressing tics at work/school/in public, you now expect them to do so for YOUR comfort. And it may work at first, because no one feels worse about being disruptive than we do! But eventually, the urges will boil over. When they do, they are often 10 times worse, and cause other comorbidities to strengthen such as anxiety because we are afraid to be punished for what we cannot control. Furthermore, a resentment will grow. A realization will start to become clear that we are not being accepted for who and what we are, and I can speak from experience that a wound like that can take decades to heal, if ever.

The reasons actions like the ones mentioned above are unacceptable would take me days to cover, but the number one on my list is that there are easily found and professionally laid out resources for family members related to helping them learn to cope with this diagnosis within the family. The Tourette’s Association of America is always a great place to start, and they have an entire portion of their website dedicated to this subject. I’ll even make it easy for you to find/share with anyone who may need it. Just click HERE.

Be kind to one another. Be supportive of solutions to disruptions, instead of authoritative about something that you could never command away. We really are all in this together!

See you all here next time!

Things that scare people with TS

Hello everyone! Thanks as always for supporting this blog and the fight for Tourette’s Awareness. Without you this would just be an idle vessel.

This blog entry is sort of a seasonal theme, which is something new, but I hope to sort of make a “thing”. With Halloween less than two weeks away, I thought it would be fitting to list some things that scare me because of my TS. This is not meant to be a blanket statement list. Everyone experiences TS differently and I’m sure has their own type of fears because of it. These are just the ones I feel might be of interest, or might fit in with a good portion of the crowd.

• Long lines at the grocery store – O man…lemme tell you how much fun it is to be in line with people who are already generally in a bad mood, cramped between two racks of magazines with a bulky cart as you try not to draw attention to yourself, or twitch your arm and knock something over. It isn’t fun at all. In fact, I have circled around the store in hopes a shorter or new line will open up just to not stand there longer than I have to.
• Being stuck at long lights or in construction while driving – This is sort of similar to being in a long line, but now the people in the car next to me are assuming I am either on drugs or shouldn’t be allowed to drive my vehicle. I can’t keep my windows down on a spring day at lights because I don’t want anyone to hear me tic. It truly makes me hate driving.
• Theaters. Library’s. Anywhere that involves being calm and quiet for long periods of time. – I remember the fear I used to have going to class, especially that first day when you don’t know anyone in class or how they’d react to your tics. i get this fear any time i have to go to a graduation, or even a funeral.
• Losing our friends – I feel like this is a fear for most people, but with TS, it is twice as frightening. It is hard enough to make friends as a normal, healthy individual. When you have something like TS that can be socially embarrassing, it is hard to find people who not only don’t mind being around that, but know how to conduct themselves.
• Long trips – Again, most people get anxious about these. However, they aren’t worried about injuring a passenger on the plane with a leg or arm tic. Or worrying said passenger demand they be moved.
• Medical exams – Whether it be the dentist making you hold your mouth open a certain way and you cant jaw tic. Or an eye doctor asking you to look a certain way and you can’t eye tic. Or maybe an x-ray and you cant twitch your arm, leg or neck. not being able to tic in these situations causes a lot of anxiety. After a very long root canal last year, I can attest. Nothing makes you want to tic more than being restrained.
• Holding babies – For the record, I am not afraid to hold a baby. I love babies. I love being around babies and have tried to be a big part of my nephews life since the second he was born. This is more a fear of holding a sleeping baby, or holding a baby while other people are watching you. I say this because, I in particular have a tic where I will scrunch my oblique and abdomen. And when you are holding a child in your lap, that is going to move them. It might even wake them up if they are sleeping. And if someone is watching you, they are going to start questioning why they let you hold their child. Awkwarrrrrrd

That concludes my short list. As I said, this is not going to hit home with everyone, but I think the idea of having unique fears because of your TS is pretty common. If you’d like to share yours, I’m all ears (Ok, well eyes) Who knows, maybe we will have them in common. Sometimes that is as comforting as anything.

Be safe out there and HAPPY HALLOWEEN!