Out Of Hiding

After what feels like almost a lifetime of trying to hide my symptoms from others, it feels nice not only to admit having OCD and tics but to be open about this with others. That means sharing with people in a way that is meaningful. That being said, I’m still reluctant to tell every single person I meet that I have OCD right away; I have no way of knowing how they will react. In fact, I still wonder how many of those close to me are secretly ashamed of who I am after finding out. Would some people rather me hide my flaws, and pretend they don’t exist, than admit them? But also, some people just don’t take it that seriously — the casual, faux “I’m so OCD” type of people. And I don’t even want to judge or be rude to those — they just misunderstand, after all. So while I don’t necessarily announce to everyone, it’s nice to be comfortable with being open about who I am and why I am that way. I like not feeling like I have to hide anymore. I wish that I could trust everyone to be reasonably understanding. If I knew that, I would tell everyone right away.

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Will It Be OK: Greatest Hits

Upon publishing my last entry to WordPress, I found out it was my 100th post. So in honor of 100 posts on this OCD and Tourette’s weblog started almost one year ago, or rather in honor of 101 posts now, I present to you: The Best of “Will It Be OK.” The following is a list of hyperlinks to what I feel have been my best — or most memorable — posts throughout this blog’s short life. These picks do not necessarily reflect what I think is my best writing, but also sometimes what links to the most interesting material or important points.

OCD Meme: This is an image post, and I link to it because I’m proud that I made this meme myself. It describes the way different parts of society may sometimes view OCD, fused with humor. This image is featured on my “About” page along with a Tourette’s (non-meme, non-humorous) image which I did not make myself.

Monk And The Lamp: Probably should’ve been titled, “Mr. Monk And The Lamp.” In this “episode” I pick apart an episode of Monk and how that particular story doesn’t portray OCD accurately. That being said, Monk is a great show, and I’ve watched it frequently. At times it does accurately represent OCD — just not always.

PANDAS: Now that I’ve lost my father, I especially treasure this one because my sense of humor therein reminds me so much of his. I feel like he was kind of writing through me with this post. Not that I’m the greatest comedian, but I don’t get many chances on this blog to be humorous, so it was a refreshing change. Also, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus is a super interesting topic! More research needs to be done on this controversial issue.

Link Time: Contains links to several very informative videos (not mine) about OCD and Tourette’s syndrome. If you don’t know much, this is a great place to start!

“The Spectrum”: Autism is not the only spectrum.

Tourette’s Brains = Greater Motor Control?: Do people with Tourette’s syndrome have greater motor control? Are they less likely to respond reflexively?

You Might Have OCD If…: While I was kidding when I wrote this, it’s probably half-true!

Alphabet Soup Syndrome: When you have so many disorders that it’s like, OCDTSASADHDADDALKFLKSJDFKJDF.

Game Illustrates Inner Struggle of Tourette’s: A videogame to help people understand Tourette’s syndrome? Sweet!

Tourettic OCD: It’s not alphabet soup, but we’re getting there.

Dude, I Know You’re OCD…: Another image post. This one shatters a stereotype (albeit with another stereotype), and really cracks me up.

Dealing With Crises: Are people with high levels of anxiety, especially OCD, better equipped to deal with real emergencies than normal people?

Don’t Hate Me Because I Look Crazy: Insane or dangerous people don’t always look that way.

I Am Adam Lanza’s Mother’s Doctor’s 8th Cousin Twice Removed: Because someone in the blogosphere finally had to say that.

Easy Hand Washing Guide: Another humorous image post. What if the air was germy? Better wash your hands again.

What If Tics Evolved For a Reason?

OK so, you all know I’m not really an expert on… well, anything. So this is just sort of a crazy, out there idea I have and we’ll see what you think.

You know how all men have nipples? Probably because if men are born with nipples they don’t need, that doesn’t hurt anything, but if any women were born without nipples, they most likely had no way of feeding their newborn babies?

Well, I was thinking the other day that there might be a similar evolutionary explanation for tics. As annoying as tics can be (for us who have them and for our friends and loved ones), and downright miserable and heartbreaking even for some, imagine if there were people born who did not have the urge to blink or breathe. These body actions are somewhat voluntary but also somewhat automatic, much like tics. Try not to blink and the same thing happens when I try not to tic — you will either get distracted and accidentally do it, or become so uncomfortable that you must eventually do it. Certain automatic body functions are very, very important. So maybe we’ve evolved to have tics because the simple fact is, if some people did not tend to have tics, the trend could have gone the opposite way and there would be people born who did not feel the urge to do things their body really needed them to do. If that happened, those people would have died. Maybe it did happen, and they did die — or it happened to animals long before humans evolved. Either way, I can’t help but wonder, and also not feel so strange or unusual for having tics when they’re really just an exaggerated normal feature of being human. I would rather feel like gasping every five minutes if it means preserving the same neurological mechanisms that mean I don’t forget to blink.

This is Weird

I have a tic. I’m pretty sure it’s a tic. And it’s really, really weird.

I have the breathing/gasping tic, which I’ve written about before. I also feel the need to sniffle or snort sometimes that’s different from a typical need to do so (hard to explain, but makes sense if you already know what having tics is like). The need is real, but it’s also different. But now there’s this other thing that’s popped up or I’ve just begun noticing and it’s really, really weird.

I’ll be eating, chewing my food, and about to swallow when all of a sudden I feel like I need to sniffle. There’s nothing in my nose, and my nose is not itchy. This is simply the worst possible time I could need to sniffle, because it involves the danger of choking on my food. For some reason that seems to actually tell my brain: You need to do this right now. So what I have to do is sniffle very, very carefully in order not to choke on my food, and often feel like I need to do it several times.

It’s funny because when people think of Tourette’s they think of people who blurt out the worst possible thing in social situations, such as a curse word. In my case it seems to be more about the worst possible thing in a more inward sort of way.

Of course, I can just avoid doing it — but then I think about it. I have to think about not doing it, and that’s distracting. So then I have a choice — do something distracting, or be distracted by feeling like I need to do it. Which is more distracting?

It’s not like this is greatly interfering with my life — it’s just odd, and mildly interesting. I do hope I don’t choke on my food, though. :\

OCD and Autoimmune Disorders Poll

I made a poll! I did it! I finally had an idea for a poll and then I made it! If you take my poll then I might be your friend forever. (Hint: Please take my poll.)

Also, please assume — FOR THE PURPOSES OF THIS POLL ONLY, of course — that OCD and OCPD are the same thing. Because I forgot to incorporate that into my answer choices. I know, I’m sorry. :\ There’s also a place for you to write in a custom answer, if that really angers you. And I would totally understand.

For the record — I have OCD, a tic disorder, a family history of autoimmune problems, and I have had autoimmune disorders in the past (but hopefully don’t currently.)

“Alphabet Soup Syndrome”

For some people, disorders occur in clusters: such as ADHD + OCD + Tourette’s or Asperger’s + OCD + TS or + AS + OCD + ADHD + TS. I’ve also heard there can be a financial incentive for schools to diagnose kids with disorders, particularly ADHD, but that’s a whole other discussion, and a topic on which I need to do much more research. Regardless of that, it can be easy for us to get stuck on labels, and worrying about what is “wrong” with us — but sometimes those labels have a place. Sometimes they help to explain things about our lives which otherwise simply wouldn’t make sense. They can also help others to understand us and once they know the reasons for our “weird” behavior, it doesn’t seem quite so “weird” anymore. Sure, I have tics, but place me in a room with a bunch of people with TS who shout a lot and I’m probably going to be distracted and irritated at first. But if I know it’s a tic, I can get used to it and relax.

However, if our unusual ways aren’t interfering with our lives, placing a bunch of labels on someone unnecessarily just creates confusion, and may sow the seeds for problems that otherwise wouldn’t have been there — especially when over-medicating is involved. Recently I talked to a Mom whose child has the AS + OCD + TS + ADHD combination, and she was describing to me how he’s on a new medicine which makes his tics better, but his ADHD worse.

Why do these disorders occur together? And really, in the scheme of things, how common is it? I can’t find my copy of Brain Lock right now, but I seem to remember that the rate of OCD in the general population is about 1 in 200. OCD amongst people with TS however, I remember to be about 1 in 40.

And that makes sense. There is strong evidence of a genetic link, specifically between these two disorders — in other words, they may actually be related to one another. But there is also evidence that in some people with TS, it is linked to ADHD — and I believe it is particularly things like coprolalia that are more often linked with ADHD. This means that basically, we may have two different kinds of TS — one that clusters with OCD, and another that clusters with ADHD. But what about the people with all three?

With AS, it’s interesting because AS and OCD are often misdiagnosed for each other. They both involve stereotyped, repetitive, compulsive behaviors — but the motivations for these behaviors vary, and that’s where the difference lies. But it is possible for a person to have AS and OCD, as was theoretically the case with Adam Lanza. Although I want to be perfectly clear that for all we heard in the media about Lanza and his AS, we still do not have a confirmed diagnosis. Just what is probably a pretty reliable opinion from one of his teachers.

So, maybe our alphabet should be ASOCDADHDTSADDOCPDCTDTTD. Or, ASOCDHTP.