Getting a Diagnosis with Unsupportive Family and Doctors

My parents noticed tics in me since age 5, then got me diagnosed when I was 14 but DIDNT TELL ME until I was 16 and I was looking through medical records for something and I confronted my mom. She said "oh yeah you were diagnosed when you were 14 but we didn't think it was important so we didn't tell you" I was like COOL THANKS IVE BEEN THINKING THERES SOMETHING WRONG WITH ME FOR YEARS AND IT WAS JUST TICS

I started having tics around 7 years old but suppressed it around everyone, including family. When I was 23 I told my doctor at the time and was referred to a neurologist. The neurologist was an asshole and dismissed my symptoms, saying I was too caught up on Googling things. I didn’t rack the courage to seek a diagnosis again until last year, at age 31. I again was referred by my regular doctor and was diagnosed by a really nice neurologist! Getting an official diagnosis can be extremely challenging, and a lot of doctors don’t know a lot about Tourette’s. Healthcare is so inaccessible, so just know that self-diagnosis is absolutely valid.

Hello. I've had tics for as long as I can remember, so probably started at a minimum of around 5 years old. I only got diagnosed recently

I thought I was the only one! My parents allowed me to see a doc, but wouldn’t allow me to tell the doc if something was wrong. They were pretty abusive that way. I have experienced tics/Tourette’s since I was abt 12. As an adult, I am still trying to receive an official diagnosis from a neurologist. It’s so hard to find a good one! I have received a diagnosis from other doctors, just not the brain doctor lol. It can be hard to get a diagnosis when you’re an adult bc they either don’t believe you, or they take their sweet time helping you. Just keep pushing and keep fighting for the diagnosis.

I just got diagnosed last year... I've had it since I was a kid, but my family blew it off as me just being weird. And then it wasn't worth the money to get a diagnosis - until after I had covid. My symptoms became hard to cope with, so my husband actually had to bring me to a neurologist because I couldn't even handle the drive.

I’ve had tics since I was 7 & didn’t get a diagnosis until a week before my 21st birthday. My sisters made fun of me when my tics first started & would always say “ew you look like you have Tourette’s” so from then until 7th grade I always took that as a diagnosis & thought I for sure had Tourette’s (I do, but this was way before my diagnosis) in 8th grade I mentioned possible Tourette’s to my mother & she told me there’s no way that I have Tourette’s since I don’t yell & curse, she always refused to take me to a doctor for it since she “knew” that I didn’t have it. Finally, my husband took me to a doctor for it last year & I got my diagnosis. My parents are shocked & feel bad for neglecting my concerns. I am not educating them on what Tourette’s really is, not what media tells us it is.

I never told my parents and I tend to suppress around them but my dr believed me. She didn’t officially diagnose me but believes that it’s probably Tourette’s

No that's alright! That's still helpful and makes me fell less alone honestly!

Oh, I apologize, I didn’t see that this was specifically for Tourette’s. I was diagnosed very early in my childhood (around 6-7). My previous message was in regards to my POTS/hEDS. ^^;

Several years. I began showing symptoms in middle school, and wasn’t properly diagnosed until sophomore year. I ended up homeschooled because I couldn’t walk around in public. Everyone was convinced I was just a hypochondriac, and that my anxiety disorder was the sole cause of it all.