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.

12 comments:

  1. Pam, thank you for sharing this information. I had no idea of the internal struggles, in the mind. I too, thought it was outward actions only. How awful and scary for your son and for the rest of you. I am praying that he be delivered from this. God is able and I know this is not His choice for your son to have to suffer like this. Hugs.

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    1. Thank you, Melanie. Your prayers mean so much to me. Just to have someone acknowledge what this must be like for us is a true balm to my spirit. :) Hugs to you...

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  2. Well... I wrote a lengthy comment and then the page required me to sign in, to post it. When I did, it was lost! BUMMER!! :( The shorter version is that I agree with Melanie. I wanted to say that though it can be hard to share such private and distressing issues, I have found that when I do, even if those I share with are unable to do anything to alleviate the suffering, just getting it off my chest, sharing it with one who cares for me is a relief! It eases the tightness in my chest. There is something comforting in knowing someone knows and cares. And in the case of sharing with Christian friends, there is the added comfort they will go before the Lord and hold you up to Him for mercy, for healing, for help. That is no small thing! God bless you for being vulnerable, for trusting and believing God cares and His people care as well. I pray for advances in this area that will alleviate the suffering this disorder brings to the afflicted as well as their family. May the Lord bring peace to Sam, and healing. May He restore peace and order in your home. I pray you all emerge from this as a stronger family with a stronger faith. And I pray also for protection for you all. It has to be very frightening to have ugly thoughts that you don't want to have, that don't express what you feel in your heart. This is a mental torture for Sam, I'm sure. Bless his heart. Don't give up! Hold fast to the Lord and to one another. Love you Pammie girl! <3

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    1. Oh, I hate when that happens! I always feel so bad wondering what someone wrote before they had to re-write. ;)
      Lynn, I always hope that when I share something hard there might be someone else who would benefit from my sharing, but it sure is a comfort as you said, to receive the encouragement and prayers that result from that sharing. It has been awful and scary, as Melanie said, and I would weep with thankfulness to know that you will pray that the Lord would bring peace to Sam, and healing in whatever way, and that He would restore peace and order to our home. THAT is what we crave, but even more that we would draw closer to Him because of all this. Otherwise, there is no peace. I appreciate you all. Love you lots!

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  3. Pam, my son has OCD. He is a compulsive hand washer (his hands are so dry that they are always cracked). He is very germophobic, to the point where he will not use clothes baskets for his laundry and he holds his dirty clothes as far away from his body as he can. I am certain that it affects his standard of living greatly, but he is 27 years old and will not seek treatment. It makes me sad, but there is little I can do about it. I do not think he has the violent thought. He has never mentioned that. It seems like you have had your fair share of trials, but I know that you trust the God who is holding you in the palm of His hand. I will keep you all in my prayers! xo

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    1. Oh, Tammy. :( Then you know, I know how you feel. It's very hard. Trying to ease Sam's mind is a lot of what I do every day. If he is not 100% sure nothing will happen, be it germs or whatever, he can't be sure. What if? I don't know if your son would find any comfort in it, but I am coming across so many blog posts written by people suffering with OCD... It seems to help Sam, at least for the moment, when he realizes he is one of SO many, that someone else is THINKING and feeling the SAME things he is. Thank you for your prayers and I will be praying for you all as well! xoxo

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  4. Hi Pam so glad to hear from you and thank you for sharing things with us. You and your family have been in my prayers. I have heard of some of this since my cousin's son suffers from the same thing and is unable to work. It has been a long road for them but they finally found a good dr and the right medication. I think it is important for us to share our journey to be there for others. I wish I could be there to give you a big hug and I know the other ladies feel the same. It is so hard when our kids hurt and suffer. Both my boys have anxiety issues and I know it affects them physically. I had the same thing and had to take medication. Our family has a lot of mental health issues. Our generation is finally being open about it. That is why I am glad you are doing the same and you are not alone my friend. Any of us are always here for you. You have me email and if you ever want to chat, email me and I will send you my phone number. I am glad you found a good book that explains it for you. I will let my cousin know about the book. Praying Pam, xoxoxo

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    1. Susan, it's always really comforting to me when you share your own experiences with these issues. For a long time now I have felt a real kinship with you and know God has blessed me with the things you share and have already gone through. The support one gains through being understood, and the warmth and encouragement that brings, is really helpful. Thanks so much for your prayers... xoxo

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  5. Hi Pam, just wanted to let you know I am praying and glad that we are friends!
    My middle son was just diagnosed with colitis and it is hard to watch him not be able to eat and lose weight.
    I know you know how it feels. I am hoping his meds and diet will help calm things down.Hugs and prayers. xoxo

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    1. Oh, Susan, I'm sad to hear this! So many things are so hard for so many people, and we'll probably never know how they suffer, but conditions that involve daily sustenance, eating, and not being able to just EAT or only certain things and not others, etc. is very hard to endure and watch a loved one cope with. And you are right...it is very comforting to be able to share concerns and know someone else really understands. How could we have known so many years ago, online, that in this year, at this time, we would be drawn together because of things like this? Praying for you and your family! xoxo

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  6. Pam,
    I'm a little late getting around but I have to tell you, our son is exactly the same...right down to taking Singulair! He is mild Asperger's. His OCD is more of the ritual thing. Everything MUST. BE. THE. SAME! UGH! If his world is off just a little our house is crazy! I have noticed some improvements since (now that you mention it) he ran out of his singulair and I have not refilled it. His focus seems to be improving. At age 16 it could not be at a better time!
    I don't know why our children are plagued with this. I pray that someone will soon find answers. But, until they do, we will keep on being good loving parents to our children. Taking breaks whenever possible to keep our sanity. I'll pray for you sister, you pray for me!
    God Bless!

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    1. I'm so glad to hear from you! And I'm so happy to hear your son is experiencing improvements. What a crazy life this is, and as much as we need to rely on doctors, input, etc. (in regards to Singulair) only you and your husband know your son, what is or could be exacerbating his situation. It's so hard for them, especially young men, as they get older and older and watch their life veer a little differently than they always dreamed or expected it would and/or very differently than their age-appropriate peers/cousins. Very hard growing up. Even without disorders that make it all the more challenging. I just started reading a book this morning called Brain Lock, fascinating in even just the first pages and so far very helpful. Will be praying for you all! :)

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