First off, it has been a while since I have written anything. Secondly, it has been a really long time since I have written anything about tourettes and life with that. I thought I would give an update on that.
My tics up until about a little less than a month ago were not bad. They were my normal everyday level. Almost a month ago that changed. I started having more times where my tics would be acting up. I would have more time being frustrated because I would be trying to work and I would be ticcing.
Fast forward to the 15th of July. That night I had a dream where I started saying words for vocal tics. I could not pick up the words but I could tell I was frustrated and that they were words not just sounds. I woke up that morning, went to work, and could tell something was off. A couple hours into work I started saying Hello. I would usually gasp and say hello and do it twice. This was the first word vocal tic I have had in about 2 and a half years.
I figured it would just be a day thing. I still told the people around me at work so that they knew that if I said it, not to respond. Well the next day, I was in a different department and it was more stressful than what I was used to. That day I started saying achoo as well as hello. (that one came about because I was gasping like I was about to say hello and I had the thought that it sounded like I was about to sneeze and instead of hello I said achoo.)
These were intense and constant. I did not want to be on the floor at work. I really didn't want to go anywhere. I didn’t want attention to be brought to me by something I can’t help. On Saturday of that week, I went to church. I was nervous because I knew what my vocal tics were looking like, not giving me a break and being constant, and I know that not everyone at my church knows I have tourette’s. I sat in the lobby during the service with some amazing friends. The whole time, I couldn’t really stop doing vocal tics. I felt like such a distraction. People were staring at me a lot. Things like this make it really hard for me to go places when I know my tics are bad.
The next Monday, I was telling someone at work about a story with the word bless you and someone at work. About an hour later I started saying bless you after I say achoo. That same day, I developed a tic where I would drop down to basically a deep squat. When I say this was painful after starting it, I am not even slightly joking. This tic KILLED me.
I developed 4 tics in the course of 5ish days. That is not including the tic I developed the week before where I click my tongue. I can develop tics out of nowhere but I don’t generally get more than 2 in a set time like this. To develop 5 in 2 weeks was super intense and really hard to deal with.
I would rather deal with motor tics instead of vocal tics to an extent. Tics like dropping or hitting my arm on things are painful and the only ones I would really consider worse than vocal tics. Vocal tics are more noticeable to people around me. They make me get noticed and they are the ones that people usually have something to say about.
I have to say this. I have never felt more supported and safe in a work environment as I have at Target during this time. I have had no problems with leaders or other team members. I have been able to advocate for what I need and been able to work things out to make work during this time easier. I am currently off for a few weeks in order to get my tics back in place, but I will be back.
I went to my psychiatrist on Tuesday of this week. Should I have gone sooner? Probably. Was I being stubborn and hoping it would just magically go away? Yes. I’ve had tics that happen once or twice, last a couple of days, last a week, or last years and years. I still have some tics that first started right before I got diagnosed with tourettes.
Plan of action was to change doses on meds and take 2 weeks off of work to let med change start and see where that leads. I am on day 3 or 4 of the med change and things are going really well. I have seen a huge decrease in my tics already.
The decrease in my tics makes me feel like I will be able to get back to “normal” life soon. Can I imagine a life completely without tics? No. They have been a part of me for about 8 years now and I think life would be weird without them. Does it make my life more interesting? Yes, sometimes in good ways and sometimes in bad.
Tourette syndrome doesn't always make sense. Sometimes it flares up without a cause, Sometimes there is a cause. But either way flare ups are annoying especially when it disrupts someone's entire life.
Tourette’s impacts my entire life. I know that sometimes it doesn’t seem that way with the way I act and kind of brush it off.
My tics and tourette syndrome does not make me who I am. It is not a part of my identity. It is something I struggle with but not who I am.
It is really easy to make your disorder your identity or to let people identify you as your disorders. That’s not okay. Your disorder is not your identity. You are a human being that is so much more than a chronic illness, mental health disorder, neurological disorder, etc. You are worth so much more than that. Do not let your disorders be your identity. They are not who you are. They may have helped shape you into who you are, but they are not who you are.
I struggle with the fear that when people see my tics that that’s what they are going to think of me. I fear that all people are going to see is my tourette’s and feel bad for me or sorry for me and treat me differently. I struggle with letting people see how bad they are affecting me because I don’t want to be told someone has it worse, be told that I need to think positively and find the positive in the situation, be told that I am less than based on something I cannot control.
It would be and is so easy to hide. The past weekish, I have barely gone anywhere. The places I have gone before today were my apartment, Target, my church, and Denny's for breakfast with my dad. I have basically been hiding. I haven’t wanted to go anywhere because I was so scared of what other people would say or do because of my tics. I suppressed my tics around my dad because I didn’t want to make him uncomfortable or not know how to respond. If I could’ve gone my entire work days without ticcing just to explode when I got home, I would’ve.
I want to hide when my tics are bad. This world has such stereotypes on what tourette’s looks like and how the world responds. The world nowadays responds by filming people when they do things they don’t understand and putting it on tik tok or facebook for it to go viral and make these people struggling look so bad and be mocked and laughed at. I want to hide because people aren’t always gracious about it. Some people will flat out tell you that it’s annoying and you need to stop it. In fact, I’ve had someone who I used to be friends with tell me they were annoying to her because I couldn’t stop snapping.
But why? Why do people with disorders like tourette syndrome feel like they have to hide? I don’t think that’s fair. I don’t think it’s fair that the world mocks and ridicules anyone based on something they can’t control. We don’t mock people with things like cancer because they can’t control and they didn’t choose to have cancer, so why do we mock people with disorders that they can’t control and didn’t choose to have?
I can tell you that most people with any kind of disorder do not choose to have it. I have never met someone with a chronic illness who said they wanted it. I have never met someone with a mental health disorder who chose to have that disorder. I have never met someone with a neurological disorder who asked for one. People with disorders do not ask for it. We get dealt it and then we have to navigate the stigmas and stereotypes in this world. We aren’t given a guide. We aren’t told beforehand what it’s going to look like. No one’s disorder presents itself in the same way.
Our disorders are not our identity. We do not choose to have them. But we get to choose what we do with it once we have them.
Hold onto hope and stay strong.
Madison Rae <3
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