Wednesday, October 15, 2014

OCD Awareness Week

51SP49ETNKLI wonder if, when you read this post, most of you will find yourselves not identifying with the subject matter, or if some of you will know all too well. I didn't realize it was International OCD Awareness Week. Knowing it so intimately, I should have been aware, but I've been too mired in living the day-to-day of OCD.

About a decade ago when my kids were pre- and young teens, we went through a horrendous time when my youngest son, who has Asperger's, went through extreme anxiety. It was just so hard, so horrible. We didn't understand, but also at the time he had started taking Singulair for allergies and the more I read, the more we believed the things he was experiencing, the anxiety, the very dark thoughts, might have been caused or exacerbated by the Singulair. Now, looking back? Who knows? It probably didn't help. It was a particularly grueling time that went on for many many months, I really don't even remember how long. When it finally ended, for the most part, you just don't want to look back. You're just so thankful. Some of you might remember when I abruptly stopped making Christian graphics and pulled way back online. This was the reason. It was vitally important I be completely present, here.

We have lived with vestiges of that time, ever since, but never to that extent. Until last spring. After a horrible winter, it suddenly started again, but this time, so much worse. I just can't even describe. And don't really care to. What we had been going through with Molly, particularly last November, seemed so nightmarish. But this was so much worse, it was hard to believe. At the height of this, my son was diagnosed with OCD, which explained everything, and on one plane it was a relief, to understand. But the relief was very brief. It was very hard and very horrible for weeks afterward, and during and since that time, our life has been turned upside down. It is so far from normal I have found it unrecognizable at times. Sometimes I think the worst part is being encouraged only to find hopes dashed, over and over again. It is just very grueling.

So. There is much more I could say, but it still feels so private. So hard. So painful. So daily. So often, hourly.

But, because I was unaware, and because so many are suffering, I just wanted to post during this week of awareness. My son suffers the less overt manifestations of OCD. Most everything happens in his head, his thoughts. Whereas the public face of OCD, on television and in the media, fixates on hand washing, avoidance of germs, verbal counting, rituals, visible things like that, many suffer in ways that are not visible. Or in ways that are so debilitating, so life altering, they would prefer OCD not be trivialized. How often do you see graphics on Pinterest or hear someone joke about being a "little OCD?" Only those who know OCD, who live it, know how inaccurate that really is. But that is a whole other conversation.

It is just mind-boggling to me, in this day and age, when we can find out anything on the internet, research anything we might need to know, I had never come across this particular and very difficult aspect of OCD. I had no idea that OCD stretches way beyond our usual perception of what it is. For instance, that many suffer harmful thought obsessions, worrying incessantly that they might harm or kill their loved ones. A simple post such as this one written by Steven J. Seay, Ph.D. about Harm Obsessions & Violent Obsessions, as evidenced in the quote below, would sure have explained a lot.

“This is the daily reality for many adults, teens, and children who experience harm obsessions, also known as violent obsessions, a type of OCD symptom that involves unwanted, repetitive violent thoughts, impulses, or images. Harm obsessions are typically shocking, distressing, and disturbing, and they may occur thousands of times every day. They often involve themes of violence, death, murder, self-harm, and suicide.”

Had we understood this long ago, our situation here might have evolved differently. Relief, if even in some small measure, might have occurred sooner. So, I’m writing about this so that you or someone you know will have information they might desperately need. Mostly, I think we know the things we need to know, but it is just a fact we don’t know some things because they do not touch our lives. Until they do. I now know the difference between a psychologist and a psychiatrist, and names of anti-depressants, which was not something I ever expected to need to know. I also am finding out how scary it can be when your insurance is falling apart and things that are supposed to be covered aren’t being paid and each doctor’s visit is the cost equivalent of a really nice electronic device.

So I hope this bit of what I’ve written can be of help to someone who feels like we do or doesn’t understand what is happening to them or their child or teen or a relative. The book I linked to at the beginning of this post was recommended to me in the beginning by the first doctor we spoke with. Though Sam is not a child, it hardly matters. It was a good place to start in a world where we felt like we were at someone else’s mercy. You visit someone who can help you, for two hours or twenty minutes. You live all the rest of the time on your own. So a book like this helps, to give a sense of being able to have some control over something that makes you feel out of control. I found the content incredible, one of the best books I have ever read. It talks about OCD being a family disorder, how parents feel hopeless and helpless, how siblings suffer. It’s very hard. Very isolating. Seemingly endless. Like nothing, nothing will ever be the same again.