Community
I'm coming up on my one year TS diagnosiversary, and I think the most important thing I've gained during that time is a sense of belonging to a community. I've written here before about how having Tourette's Syndrome can make me feel pretty isolated. While each of us is ultimately locked in our brain, doing battle with our own version of the TS monster, it's helpful to know that there are others fighting the same fight.
I'm lucky to be a member of a few awesome online communities where people with TS congregate. It's great to see people talk about struggles I've also dealt with sharing coping strategies. It's been humbling and eye-opening to see disability advocates speak truth to power and force those power-wielders, and me, to come to grips with the big and small consequences of ableism. I've seen brave teenagers and young adults going through all the traumas of becoming the person they want to be while also dealing with Tourette's. I've seen parents of newly-diagnosed TS patients reaching out to the TS community for guidance and support, and I've seen that community respond with compassion, kindness, sage advice, and good humor. TS can certainly bring a fellow down, but good people acting kindly can bring him right back up. Below, I'll share a few links to groups I've found a place in. Some of them have requirements to join, others are for adults only, and others are my Twitter. Okay, just one is my Twitter.
- Look, it's my Twitter! Don't go there for my tweets; they're infrequent, bland, and full of dad jokes. Instead, go there to check out who I follow and who follows me. You'll find people from all over the world living with different disabilities and conditions, and you'll quickly find that not one of these people is just a disability or a condition. You can find conversations on disability advocacy, academia, sports, anime, video games, birding, gardening, writing, and a whole bunch of cool stuff.
- This is a link to a popular TS support group on Facebook. You'll find both TS patients and their caregivers having vibrant conversations about life with Tourette's. You'll have to answer a few questions before being accepted, but it's real quick and the admins are really responsive.
- Next, another Facebook group, this time specifically for adults living with Tourette's. A really raw, honest look at the challenges and triumphs of adult life with TS. Again, a few questions to answer before you're admitted.
- Finally, a link to the awesome Tourette's Podcast. Host Ben is building an amazing community here. He also has a Facebook group, frequented by a group of people who I dare say are the nicest people on all the intertubes.
Tourette's sucks. Let's deal with it together.
I'm lucky to be a member of a few awesome online communities where people with TS congregate. It's great to see people talk about struggles I've also dealt with sharing coping strategies. It's been humbling and eye-opening to see disability advocates speak truth to power and force those power-wielders, and me, to come to grips with the big and small consequences of ableism. I've seen brave teenagers and young adults going through all the traumas of becoming the person they want to be while also dealing with Tourette's. I've seen parents of newly-diagnosed TS patients reaching out to the TS community for guidance and support, and I've seen that community respond with compassion, kindness, sage advice, and good humor. TS can certainly bring a fellow down, but good people acting kindly can bring him right back up. Below, I'll share a few links to groups I've found a place in. Some of them have requirements to join, others are for adults only, and others are my Twitter. Okay, just one is my Twitter.
- Look, it's my Twitter! Don't go there for my tweets; they're infrequent, bland, and full of dad jokes. Instead, go there to check out who I follow and who follows me. You'll find people from all over the world living with different disabilities and conditions, and you'll quickly find that not one of these people is just a disability or a condition. You can find conversations on disability advocacy, academia, sports, anime, video games, birding, gardening, writing, and a whole bunch of cool stuff.
- This is a link to a popular TS support group on Facebook. You'll find both TS patients and their caregivers having vibrant conversations about life with Tourette's. You'll have to answer a few questions before being accepted, but it's real quick and the admins are really responsive.
- Next, another Facebook group, this time specifically for adults living with Tourette's. A really raw, honest look at the challenges and triumphs of adult life with TS. Again, a few questions to answer before you're admitted.
- Finally, a link to the awesome Tourette's Podcast. Host Ben is building an amazing community here. He also has a Facebook group, frequented by a group of people who I dare say are the nicest people on all the intertubes.
Tourette's sucks. Let's deal with it together.
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