how do nurses not know what tics are?

[sam]

i have fnd which causes me physical tics (like tourretts). when i had my bloods done i felt my arm wanting to punch but the needle was still in my arm. i managed to hold it in untill the needle was out (if you dont know that will ause a burst of tics when you cant hld it any longer). after the nurses were confused even when i told them i tic and thought it was something they did.

i have to explain stuff to doctors all the time due to my 2 rare ilnesses (functional neurological disorder and complex regional pain syndrome, a rare extreme pain condition), mainly the fnd as it coppies other conditions (tourretts, epilepsy, narcolepsy to name a few) just without the actual damage happening as well as heaps of issues wih vision, hearing, the way i think etc. it gets complicated as i also have a birth defect in my thumbs, autism, ptsd, cerebral palsy, depression, possible psycosis (but this could be the fnd), burning mouth syndrome as well as a skin condition and allergys (there might be something else). i have had to explain heaps of stuff but never what tics are.

how do you even explain tics?

 

[Katie]

Tics are involuntary muscle activity. Everyone who goes through any medical training should be at least aware of it. Tics can manifest in a variety of different ways. If a person has only ever seen tics that involve the head or face, they might be surprised to encounter tics that effect the arms, legs, fingers, etc.

It seems to happen frequently that others take tics as a reaction to themselves. My wife does this. It is incredibly hurtful. I developed a tic that effects my head and neck due to trauma. When I feel very stressed or anxious, it happens. When my wife starts yelling or arguing at me, it will happen, and then she gets even angrier because she feels its some kind of attack on her. It is awful to have your body doing things you don't want it to be doing, but then have someone accuse you of somehow insulting them with your involuntary movements.

 

[Monica]

There are some good YouTube videos about Tourette's. Unfortunately people are kind of mean in their comments. I never have liked the terms 'tics.' I refer to what I do as excessive movements. These movements are compulsive. I can control them for short periods with intense concentration, but it causes mental tension and discomfort. I don't know if it is the same thing you experience, Sam. I would explain it and go from there. Even if you have to shake them and say, "Hey, this is serious and real!"

 

[Lexxi]

@sam I have a suggestion but I don't know how plausible it would be to pull off. Have you ever thought about printing out a kind of info sheet or flyer that lists your conditions and how you react to certain situations?

I know when I have to explain something about myself to someone new I get kinda nervous and my speech my starts kind of stumbling around a bit, and I will for sure start sweating; which makes me even more nervous which causes me to sweat even harder. It's embarrassing as can be!!

I've often thought about just printing out information about myself so I could just hand it to a new person then I wouldn't have to say everything verbally.

You should be able to explain everything on a half sheet of paper. I'd put the info about the tics right at the very top if that's what bothers you the most. I hope that helps.

 

[sam]

@sam I have a suggestion but I don't know how plausible it would be to pull off. Have you ever thought about printing out a kind of info sheet or flyer that lists your conditions and how you react to certain situations?

I know when I have to explain something about myself to someone new I get kinda nervous and my speech my starts kind of stumbling around a bit, and I will for sure start sweating; which makes me even more nervous which causes me to sweat even harder. It's embarrassing as can be!!

I've often thought about just printing out information about myself so I could just hand it to a new person then I wouldn't have to say everything verbally.

You should be able to explain everything on a half sheet of paper. I'd put the info about the tics right at the very top if that's what bothers you the most. I hope that helps.

hi. i actually have cards for fnd for that purpose but i completly forgot about them