because this so what OCD can look like, and it’s not what you think…

If you’ve followed my blog for any amount of time, you know that we have spent the past year or so really trying to nail down what has been going on with my daughter Lauren. She has struggled with anxiety, depression, sensory issues, and the most pressing issue at hand – OCD. And it’s funny, because people see Lauren out and about or in pictures and always tell me, “well she looks so normal.” And I’m like, yes I know. That’s the thing about mental health – it’s often an invisible struggle – thus the feelings of isolation mental illness can create.  For the most part, Lauren functions. But as of late, the meltdowns contained to at home happened more and more in public – or just kept her from going out of the house in the first place – and so we had to make some changes regarding interventions.

The good news is, she is doing so much better. Like a 180 degree turn for the better. Thank you Jesus. He knew we were at our breaking point. The other good news? I have learned so much in the past year that I could not have come across any other way.

Being a therapist with a significant amount of education and mental health experience under my belt, I had no idea what OCD really looked like – especially in a child. I knew the textbook definition. I know CBT and ERP are the preferred treatment modalities and I even knew some things that were helpful for people I had worked with. But at the core, I saw it just as stereotypical as everyone else.

OCD equals hand washing, lock checking, Jack Nicholson, and crazy organized sock drawers.

And when I share my daughters diagnosis that is what people think. They say things like, I organize like crazy too! Or yes I totally get it – I wash my hands all the time also. And maybe they do get it. But for the most part I think we have a vastly skewed idea of what OCD really is. And don’t get me wrong – there is a reason this is the stereotype. It is what OCD looks like for some people, but I think for a whole lot of others it looks more like this.

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My daughters room is clearly not organized. It has never been organized. She hasn’t ever had a clean room for more than 5 minutes in her life and the only reason it was clean for even 5 minutes is because I spent hours working on it while I mandated that she play outside. At this point in her journey she cannot even be in her room with me while I clean it because she gets so upset, agitated, and overwhelmed that something might have to be thrown away or that she might not be able to find the things I move. People say, why don’t you have her help you clean it? But they don’t get OCD. She cannot help me clean it because it leads to massive screaming meltdowns over tiny pieces of paper that she cannot find the proper place for, which will then lead to her needing to take a hot bath and several minutes of deep breathing to de-escalate her. That my friend, is OCD.

It looks like not being able to walk across the carpet at times because she cannot stand the way it feels on her feet. After she walks across she can’t stop thinking about the way it felt and may have to wash her feet to relieve herself from the sensation. It means crawling on our knees and elbows when we get out of the car after school  because the hands and feet can’t touch anything and immediately need to washed to escape the feeling that something is on them. Sometimes there are tears for hours after that because even after washing them she cannot escape the pain that feels like something is on them. That is OCD.

She knows these things aren’t rational. She knows she is upset over what others see as “nothing” but she doesn’t know how to make it stop.  Sometimes she curls up in a ball next to me and begs to make it stop but then gets angry at what I suggest because she has already obsessed over the fact that the coping skills anyone teaches her will never work. That is OCD.

Please keep in mind, these situations are when OCD is at it’s worst. Life isn’t always like this. But it is sometimes, and the sometimes really stink. Right now she is in a really good, like really good place. We have made some big changes and God is a BIG God. But I know certain things will likely be a struggle for her throughout her life, just like Paul’s thorn in the flesh. And that’s okay, because God does what He does for a reason even when we really don’t understand. None the less, this passion burns in my heart for people to understand the invisible struggle that so many people face on a daily basis.

OCD sucks. It really does. And I know it’s controversial when I put my family’s stuff out there. Sometimes people think it’s good and sometimes people wonder why I share…but this is why I do. Because people need to know that they are not alone. Because these things can only stay shame bound as long as we continue to hide them in a dark box. People need to know that a child from a “good” home (whatever that is) with two parents who shower their kid with loving kindness and have read all the parenting books in the world can still have a child that struggles with ANYTHING. That mental illness does not have a bias, but can happen to anyone at anytime. And sometimes despite peoples best efforts they can’t just “stop it” or “get over it”. So we love people with it and we love people through it, just like people love us with and through our own junk. We own it and cope with it the best we can on a day to day, and sometimes minute to minute basis. And we choose love. To love just as people are, right where they are…because that is what Christ calls us to do.

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Comments

  1. says

    I am grateful for you sharing what OCD looks like for your daughter. It sounds so familiar to me. I am an occupational therapist and so I had mental health training, yet I too, had no idea what OCD looked like. And we waited too long to bring my daughter to an OCD specialist counselor. It took a long time to bring her back. I also have written blogs about her experience and my husband just published his Kindle book on OCD. he now works helping parents and kids- focusing on those with anxiety. Every time I see a silly post on Facebook about someone “being so OCD”, I feel I need to respond to educate and enlightening. The most challenging was the time I saw someone post “I wish I was more OCD”.

  2. Mary says

    Thank you for talking about mental illness. It is no different than having allergies or diabetes and yet our culture treats it with a stigma. My mother-in-law lived with us for seven years prior to her death. She had a twin diagnosis of OCD and bipolar. It made life interesting, to say the least. Both my oldest daughter (24) and my husband of 25 years take medication for depression. Both will probably be on it for life. I have a thyroid disorder and will need to take medication for the rest of my life; there is no difference.

  3. Jean Barr says

    I am finishing up a counselor degree and am not yet licensed. But I’ve read about counseling related issues for 40 years. My husband’s mother clearly has issues. I suspect she has a general anxiety disorder, OCD or an OCD personality disorder, possibly bi-polar and or dysthmia (long term depression), has claustraphobia (afraid of elevators and enclosed MRI’s). She is 85 yrs. old, widowed for 15 yrs., and my husband is her only child. Now she is having episodes which I suspect are panic attacks. She is angry most of the time and has been a grudge bearer for at least the 31 l/2 yrs. I’ve known her. She has been in/out hospitals past couple mos. Strong heart. Sad – she could’ve been helped yrs. ago. Now she probably needs in-home care or at least assisted living. But she is obstinate. We are unable to take care of her, and she doesn’t want to live with us, wants to stay in her home. I love her but just can’t deal with her on continous time frame to keep my sanity. She is clingy on one hand and independent on the other. My husband doesn’ t know what to do.

  4. says

    My name is Beth. I have suffered with depression for years without seeking treatment. I had a psychological profile done and depression has mushroomed into severe clinical depression, sever anxiety with agoraphobic tendencies and something else but I forgot what. I have a lot of trouble with people who want me to act “normal”. Sometimes I just want to scream at them and ask if they REALLY think anyone would CHOOSE to live with this sort of bone crushing heaviness?!! I am so sorry for your daughter and have just prayed for her. Thank you for sharing this.

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