Diagnosis
I mentioned in my previous post that I was diagnosed with Tourette's Syndrome just this past December at age 37. My attempts at diagnosis started roughly 25 years earlier.
When I say "my attempts", I really mean "my mom's attempt" at diagnosis. My mom didn't (and still doesn't) miss anything about her three boys. She noticed when I began to shake my head and fling my arms out, and both she and my dad noticed my quiet grunts. I can't remember how old I was exactly, but I do remember that the first time a classmate made fun of me was in the 5th grade. He's a failed rapper now, and I try not to be happy about that. My failure rate is high. Anyway, at a checkup during the summer time, my doctor asked our pediatrician what she thought it might be. "Nervous tics" was her answer, and vividly remember my mom telling me that as we drove across train tracks. Not even sure which train tracks they were. My mom said the pediatrician told her they'd fade eventually. "You could control it if you wanted to" is likely a thing most TS patients have heard a few times in their lives, and I'm only now realizing how much long-term damage it can cause. I imagine that to a neurotypical person, the idea of not having full control of your body 100% of the time just sounds absurd. Conversely, that's kind of how I feel about the opposite.
Fast forward fifteen-ish years (so think 2004-2005), and I'm in my mid twenties and still ticcing. My late teens and early twenties were a pretty chill time for me TS-wise, but the tics began coming back pretty strongly around this age. Lots of head shaking and throat clearing and lip smacking. It was around this age that I began having tics with my eyebrows, which to this day remain my most consistent tics. I've been told a number of times that I "have such expressive eyebrows!" Maybe people think I'm constantly surprised or delighted? Constant delight seems like a nice mental state to live in, but no: those eyebrow movements aren't intentional or controllable. I've always been terribly embarrassed by my eyebrow tics because your eyes convey so much to people. The idea that some girl at a bar thinks I was lewdly raising my eyebrows at her while I was just being extra ticcy is mortifying. No one has ever mentioned it happening, but I imagine it has to have by now.
So I'm in my mid-twenties, still ticcing, and on my own health insurance because I'm working for the now-defunct Borders book stores. I made an appointment to see a neurologist, and I have to say he was pretty dismissive. He didn't even mention Tourette's during our conversation, and he said that my tics were "just the way your brain is wired." At the time in my head, I still thought TS was the disease were you scream curses in public and smack things off tables and yell at little kids in parks, so I didn't even think to bring it up myself. He told me that they could give me really really strong medicines that might help alleviate my tics, but that they'd severely tranquilize me. I declined and left, feeling pretty bad about myself. I remember thinking that if the neurologist says there's nothing really wrong with me, then is this just something that everyone else deals with and they all just do it better than me? Am I just weaker? This, I would learn, is not a good way to feel about yourself.
Fast forward 12 years and I'm married. My wife is the bomb-diggity, and the internet has fully come of age. My tics are still bad, and getting worse because of stress from the BEST POSSIBLE SOURCE: we're going to have a son. Other people with TS understand this instinctively, but to non-patients: stress can make it a lot worse. High stress negatively affects both the tics (the tip of the TS iceberg) and the co-morbids (the body of the iceberg, like anxiety and ADD and OCD, which I'll talk about at a later date) associated with TS. By this age, I'd developed a consistent new tic with my mouth where I'll purse my lips and make a kind of bird chirping sound. Part of this tic also causes me to bite the inside of my bottom lip, which has led to some pretty painful sores, which peaked right before and right after my son was born.
The reason I mentioned that the internet had finally come of age during this stage of my life is that I could research TS online on my own. I hit every box on the checklist, and my wife and I were pretty sure that I had TS. In the course of doing all the Googles, we stumbled upon the commonly held belief that there is a genetic component to Tourette's. Even thought I'd never been officially diagnosed by a doctor, I wanted to make it official so that as my son grew up, we'd be certain that we had to be on the lookout for him to develop Tourette's. While I was on leave following his birth in August, I had my yearly checkup with my doctor. I was so close to not saying anything but as she wrapped up and asked if I had any questions, I brought up my tics. My doc is pretty relaxed, so she nonchalantly busted out some thick medical manual and ran me through a series of questions, all of which I answered yes to. "Well it look like you, my friend, might have Tourette's Syndrome," she said. She referred me to some neurologists in the area, and I let it be. For four more months.
Finally, my amazing wife made me an appointment to see a neurologist at Penn Medicine in Philly. I was a total wuss about it, mostly because of the impostor syndrome I mentioned in my previous post. I kept thinking that the doctor would laugh at me or even worse be angry at me for wasting her time when she could have been taking care of actual TS patients. That's obviously not what happened, and she quickly diagnosed my TS and started me on medication for my tics. It was December at the time, and I remember walking back to my car in the halfassed sun you get during the winter. I was actually a little sad at having been diagnosed, and it took me a few months after to figure out why. I realied that I'd been holding out hope that I didn't really have TS and that one morning, I might just wake up normal. That was a sad realization because it meant that even at age 37, I hadn't yet accepted myself for who I was, tics and all. I was happy to know for sure since it meant that I truly was a member of a larger community and that I could reach out for support and advice from other people with Tourette's without feeling like I didn't belong.
I guess my reason for sharing this part of the story is for the benefit of anyone readers who think they might have Tourette's but haven't sought a diagnosis. I strongly recommend that you do. There are a whole lot of people out there (and me, here!) who are ready to support you, defend you, laugh with you, and pound tables in frustration with you.
Today's tics:
Throat clearing
Eyebrows
Lips
Left Arm Flings
Right Middle Finger
When I say "my attempts", I really mean "my mom's attempt" at diagnosis. My mom didn't (and still doesn't) miss anything about her three boys. She noticed when I began to shake my head and fling my arms out, and both she and my dad noticed my quiet grunts. I can't remember how old I was exactly, but I do remember that the first time a classmate made fun of me was in the 5th grade. He's a failed rapper now, and I try not to be happy about that. My failure rate is high. Anyway, at a checkup during the summer time, my doctor asked our pediatrician what she thought it might be. "Nervous tics" was her answer, and vividly remember my mom telling me that as we drove across train tracks. Not even sure which train tracks they were. My mom said the pediatrician told her they'd fade eventually. "You could control it if you wanted to" is likely a thing most TS patients have heard a few times in their lives, and I'm only now realizing how much long-term damage it can cause. I imagine that to a neurotypical person, the idea of not having full control of your body 100% of the time just sounds absurd. Conversely, that's kind of how I feel about the opposite.
Fast forward fifteen-ish years (so think 2004-2005), and I'm in my mid twenties and still ticcing. My late teens and early twenties were a pretty chill time for me TS-wise, but the tics began coming back pretty strongly around this age. Lots of head shaking and throat clearing and lip smacking. It was around this age that I began having tics with my eyebrows, which to this day remain my most consistent tics. I've been told a number of times that I "have such expressive eyebrows!" Maybe people think I'm constantly surprised or delighted? Constant delight seems like a nice mental state to live in, but no: those eyebrow movements aren't intentional or controllable. I've always been terribly embarrassed by my eyebrow tics because your eyes convey so much to people. The idea that some girl at a bar thinks I was lewdly raising my eyebrows at her while I was just being extra ticcy is mortifying. No one has ever mentioned it happening, but I imagine it has to have by now.
So I'm in my mid-twenties, still ticcing, and on my own health insurance because I'm working for the now-defunct Borders book stores. I made an appointment to see a neurologist, and I have to say he was pretty dismissive. He didn't even mention Tourette's during our conversation, and he said that my tics were "just the way your brain is wired." At the time in my head, I still thought TS was the disease were you scream curses in public and smack things off tables and yell at little kids in parks, so I didn't even think to bring it up myself. He told me that they could give me really really strong medicines that might help alleviate my tics, but that they'd severely tranquilize me. I declined and left, feeling pretty bad about myself. I remember thinking that if the neurologist says there's nothing really wrong with me, then is this just something that everyone else deals with and they all just do it better than me? Am I just weaker? This, I would learn, is not a good way to feel about yourself.
Fast forward 12 years and I'm married. My wife is the bomb-diggity, and the internet has fully come of age. My tics are still bad, and getting worse because of stress from the BEST POSSIBLE SOURCE: we're going to have a son. Other people with TS understand this instinctively, but to non-patients: stress can make it a lot worse. High stress negatively affects both the tics (the tip of the TS iceberg) and the co-morbids (the body of the iceberg, like anxiety and ADD and OCD, which I'll talk about at a later date) associated with TS. By this age, I'd developed a consistent new tic with my mouth where I'll purse my lips and make a kind of bird chirping sound. Part of this tic also causes me to bite the inside of my bottom lip, which has led to some pretty painful sores, which peaked right before and right after my son was born.
The reason I mentioned that the internet had finally come of age during this stage of my life is that I could research TS online on my own. I hit every box on the checklist, and my wife and I were pretty sure that I had TS. In the course of doing all the Googles, we stumbled upon the commonly held belief that there is a genetic component to Tourette's. Even thought I'd never been officially diagnosed by a doctor, I wanted to make it official so that as my son grew up, we'd be certain that we had to be on the lookout for him to develop Tourette's. While I was on leave following his birth in August, I had my yearly checkup with my doctor. I was so close to not saying anything but as she wrapped up and asked if I had any questions, I brought up my tics. My doc is pretty relaxed, so she nonchalantly busted out some thick medical manual and ran me through a series of questions, all of which I answered yes to. "Well it look like you, my friend, might have Tourette's Syndrome," she said. She referred me to some neurologists in the area, and I let it be. For four more months.
Finally, my amazing wife made me an appointment to see a neurologist at Penn Medicine in Philly. I was a total wuss about it, mostly because of the impostor syndrome I mentioned in my previous post. I kept thinking that the doctor would laugh at me or even worse be angry at me for wasting her time when she could have been taking care of actual TS patients. That's obviously not what happened, and she quickly diagnosed my TS and started me on medication for my tics. It was December at the time, and I remember walking back to my car in the halfassed sun you get during the winter. I was actually a little sad at having been diagnosed, and it took me a few months after to figure out why. I realied that I'd been holding out hope that I didn't really have TS and that one morning, I might just wake up normal. That was a sad realization because it meant that even at age 37, I hadn't yet accepted myself for who I was, tics and all. I was happy to know for sure since it meant that I truly was a member of a larger community and that I could reach out for support and advice from other people with Tourette's without feeling like I didn't belong.
I guess my reason for sharing this part of the story is for the benefit of anyone readers who think they might have Tourette's but haven't sought a diagnosis. I strongly recommend that you do. There are a whole lot of people out there (and me, here!) who are ready to support you, defend you, laugh with you, and pound tables in frustration with you.
Today's tics:
Throat clearing
Eyebrows
Lips
Left Arm Flings
Right Middle Finger
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