View Full Version : Does knowing you have TS help or hurt?


gingagirl
08-14-04, 08:21 PM
My best friend's brother was "very ADHD" as a kid --for this post I'll call him "Bobby". He also had facial tics, and as he got older I also noticed sound tics. I was told that the tics were a side effect from Bobby's ADHD meds and that he was seeing a neurologist to adjust his meds. I was a teenager when my friend told me it was a side effect, so I never really questioned it.

Well, a few years ago, Bobby went for more testing/assessment and received a diagnosis of Tourettes. Maybe he was 17 or 18 at the time (although I think he must have been older) ...the messed up thing is that Bobby has never been told that he has Tourettes. His mom (and my friend) believe that knowing that he has TS would not benefit him in any way --they think it would only hurt his self-image (which is already pretty low).

Bobby is now a young adult. He finished college with a teaching degree. I don't think he's gotten a fulltime job yet --last I heard he was working as a substitute teacher. He is a nice guy. Very smart, very talkative, a little intense at times. My friend and her sisters always teased Bobby and got annoyed with him because he was so hyper, impulsive and talked nonstop. Bobby teased his sisters too, but he never stood up for himself when the teased him about his "ADHD." I felt sorry for him when he was a kid --I used to argue with my friend about how she treated her brother. The whole family was pretty dysfunctional, lots of angry yelling from the father & kinda too much "mothering" from the mother (building co-dependent relationships with her kids).

My questions:

Does knowing you have TS help or hinder you in anyway?
How old were you when you were diagnosed?
Do you think I should push my friend to tell her brother about his diagnosis?
Should I tell Bobby about it myself? (I'm fairly close with the whole family. It would be weird for me to call Bobby, but not out of the realm of possibilities.)
Or is this totally not my place? Should I just mind my own buisness?

bigbowlindude
08-15-04, 01:02 AM
I was diagnosed a few years ago. Seeing my moms talk shows, with other people who have TS, thinking wow.. that must be nice doing it all the time.. slowly realizing hey.. that's me I have it.
I myself don't advertise it. If someone thinks I'm wierd or I'm winking at them or keeps asking if I need something to drink I'll normally let them know. Most people are pretty understanding, and will talk to you about it. Of course others are not and believe it's just made up.
If Bobby doesn't know he has it I would talk to your friend about it, leave the decision to her. My mom's friend has it worse then me she tells me, but he is very insistant that he doesn't have it, and will get pretty upset if you try to push him. I do understand, it took me a long time come to the realization that I had it... all though it was bit of relief to know it was something and I just wasn't really wierd. Ok hope that helps.

Energizer_Bunny
08-18-04, 12:49 AM
Gina, I believe knowing that I have tourettes and being diagnosed was a big plus for me. It explained so much that I did not know before. I felt the same as bigbolwingdude in that it took me awhile to come to the realization that I had TS.

You asked me if it has hindered me in anyway, and I have to say yes to that question, especially when my tics were on the severe side. TS can also be a very painful disorder, which many do not realize because of all the muscle groups involved while ticking. My back is basically full of knots. Like ADHD, TS as a child can also cause low self esteem problems in individuals, being picked on or bullied as a child, problems with rage and many other factors.

Also, if your friend Bobby has ever seen anything on TV about TS, he could be wondering "hey that seems like me". He may eventually figure it out on his own and seek a diagnosis by himself. As far as what you think you should do about telling Bobby, I have to agree with bigblowingdue when he said that it is a relief to know you have a tic disorder and there is a reason for being the way you are. In my opinion and from your comments on knowing the family and I think that you should mention it again to the sister about telling him. After all he is no longer a child but a young adult. You may want to do some research on TS on the net and have some printed information to show to her. There could also be a chance that the family is embarassed by the fact that their son as a neurobiological disorder

My dad has told me so many times concerning certain issues, just to mind my own business and stay out of it, but since I have ADHD and I am impulsive, sometimes I just can't help it and that is because I care.

I was 35 or 36 when I was diagnosed with ADHD, OCD and TS and I am now 42.

Hope this helps

Piupau
08-18-04, 11:41 PM
For me it helped a great deal to know what was going on with my body. I thought I was a complete nut because of all tics, either that or having a brain tumour. I read about TS on the net and I started crying. For the first time I saw that all this was called something and that I wasn't just wierd or crazy as my friends and siblings always said. My mom has just shut her eyes and has never even tried to talk about my problems, everytime I try she just talks about something else. Could never talk to my dad, we were always fighting. Now I've realized he too has TS and adhd, just like me. I got my ts+adhd dx last year, when I was 26 yo.

Why won't they tell him he has TS? He is all grown up now. If he stops taking his adhd meds he'll propably still be ticking, if not earlier then THAT's when he'll realize the side effects won't go away.

Maybe you could talk to your friend about it, that he is an adult and there are many ppl all over the world doing the same stuff he does. And that it's called TS. Just like the other two, I think it's best for him to know. It's better to know than find out later in life by himself and then be angry with your friend and her mom because they didn't tell him. If he is an adult and he still has tics he'll propably be ticking all his life, also if he knows he has TS he can see a doc about it if he get serious tics that injure him or other ppl, or he could adjust his adhd meds to make the tics smaller.

krisdevan311
09-08-04, 08:50 PM
My son was diagnosed just over a month ago at Shands. It took a local neurologist (terrible experience), a social worker, a behavioral therapist, a psychiatrist, and his primary to get almost as frustrated as us to decide he needed to go out of area. Finally... somebody could put 2 & 2 together. It was very nice actually being told what was going on with him. At the same time we beat ourselves up over and over because we've been treating him wrong for the past 3 years. Now we're waiting for an appointment to see another specialist at Shands in Gainesville, FL. Now we can look at the future with knowledge and positivity.

neuroangel
10-11-04, 02:27 PM
Krista,

Just out of curiousity, how was he being treated before the Dx? Was he being medicated for something he did not have, or was he given behavioral therapy/reprimands that didn't do any good?

I was medicated for things I didn't have. I was on antipsychotics and mood stabilizers....ugh. Now I am on the right meds, and even though I still tic, I am stable and much happier with myself as a human being.

Cyndi

Zan
11-14-04, 02:09 AM
Does knowing you have TS help or hinder you in anyway?

How old were you when you were diagnosed?
Do you think I should push my friend to tell her brother about his diagnosis?
Should I tell Bobby about it myself? (I'm fairly close with the whole family. It would be weird for me to call Bobby, but not out of the realm of possibilities.)
Or is this totally not my place? Should I just mind my own buisness?

Hi ginga

My son was in grade 2 (7 years old) when he ws dagnosed with TS/ADHD/OCD. At that time, I think it helped the people around him more than it helped him to have the diagnosis, years later it helps him more than the rest of us - knowledge is always good when it is someting about yourself.

If you consider yourself to be close enough to discuss a medical issue then go for it. Someone that stands on the edge sometimes sees things differently and you might go a long way in easing his mind or at least get him pointed in the right direction.

You obviously care - its your place