TRIGGER WARNING: MENTION OF TICS, FND, SELF-H*RM, ANXIETY & DEPRESSION.
Hi! My name is Ellie I have diagnosed Tourettes syndorme, FND (functional neurological disorder), and severe anxiety and depression.
I started developing tics when I was about seven or eight. I would make random small noises that I heard in shows. As well as jerking my arm up at random times, I developed more tics when I was around ten or eleven years-old. I would sniffle or hiccup and my legs would twitch. When I was thirteen years old I developed severe anxiety.
I hated going out in public or going to family events. I would feel like the walls were closing in on me and that everyone was watching me. It got to the point were I didnt want to go anywhere and I would pretend I wasn't feeling well so I didn't have to go anywhere. I was barely able to have a conversation with anyone even family because of how anxious I would get.
When I turned fourteen I got very depressed and was like that for two years. I wouldn't eat or leave the house I started failing my classes and I started losing friends. My parents started to get worried because the tics I had for years were getting very frequent and starting to multiply. Along with my anxiety and depression were escalating and getting really bad.
When I was fifteen my parents started looking into getting me a therapist. COVID made everything so much harder because everything was on lock down and we couldn’t leave our houses much. I started struggling more than ever I was failing all my classes my school work was piling up I wasn’t doing anything and I was just starting to self destruct. I would lie and lie and lie to my parents and I started self harm. Shortly into the summer before sophomore year my parents found out about my self harm and found out about other things going on...
Sophomore year started and things were off to a good start I was finally talking to my parents and telling them everything. Shortly into sophomore, I started getting horrible migraines and I was in pain all the time. My tics started to escalate at the same time, I started making clicking noises with my mouth and I would stomp my feet and say random things. My parents and I passed off the tics as anxiety and that was that. My migraines got to the point I had to go to the Emergency room for high dose meds to get rid of them. When they weren’t stopping and just getting worse and worse I ended up being admitted to the hospital for four days to get monitored on a medicine that finally got rid of my migraines.
About a week after that hospital admission, I was with my parents at home and we were just talking to the guy that was painting the house. My tics just exploded. I was jumping up and down I was blurting things out and I was practically flailing all over the place. We were all concerned I practically couldn’t control anything I did and my parents took me to the ER again. They gave me a medicine that finally calmed down my tics so I could sit down and relax. I was still ticking just a lot less than before. I developed a migraine and they ended up admitting me to the hospital to give me the meds to get rid of it. I was in the hospital for three to four days till the migraine was gone. I was ticking the entire time and my dad who was with me in the hospital started asking doctors what this could be. I kept pulling out my IV, smashing food and even hitting myself. They told us to go see a specialist on tics and Tourettes to get officially diagnosed. I got discharged and the next week we went to a doctor that told us it was Tourette’s syndrome and that’s what had been causing my tics all these years and that I was born with it. We asked questions like is there anyway to get rid of it or will it eventually go away. She told us there is no cure and that I will have it forever but I could take meds that could possibly help. So we got the meds and I’ve been on them ever since to help me with my tics. During this time I was also taking meds that were supposed to keep my migraines away and I was having other problems I started having absence seizures and even Full body seizures. It got so bad an ambulance had to be called and I was yet again take to the hospital and admitted. I got an ECG to determine if they were from epilepsy or not. They were not. They were called psychogenic non epileptic seizures, PNES for short. I started having problems with pain all the time and sometimes not being able to walk or move my arms. My limbs also would lock up in weird positions and stay that way for awhile. We went to my neurologist to see what was up and they diagnosed me with FND. At this point in time I’m sixteen years old most of the hospital visits happened the last year since my sixteenth birthday. I still am seeing a therapist and trying to deal with my anxiety and depression I’m turning seventeen on august 21st and can’t wait.
My Tourettes is no longer new to me and I’m now trying to learn as much as I can and trying to educate others as well so that Tourette’s is more understanded and accepted by everyone and people with Tourette’s and tic disorders can be more comfortable in public. My goal is to reach as many people as possible and to help end the stigma about Tourette’s and help people stop treating it as a trend.
If you have read this far, thank you so much! You are so appreciated and I love you!
This is me; it’s nice to meet you! 😁
If you enjoyed Ellie’s story then don’t forget to like and comment to show your support! ✌🏻