New member: My OCD story

[larzche]

Hello! I'm new here and wanted to share my story.

So I’ve labelled myself as “OCD” for a long time, but never really understood the disorder. I have many OCD habits that cause me to take a longer-than-average time to do things such as grocery shop, read, try on clothes, reply to emails, texts, etc. A lot my tendencies seem to be perfectionistic, searching for a “just right” feeling, or fear of not making the right decision. In 2017, all the mental retracing (I’d constantly go over things that just happened) and checking gave me these waves of anxiety, when I would feel like crying for seemingly no reason. And I couldn’t figure out why, which made my anxiety worse.

This was untreated and I started to have scary, violent, perverted intrusive thoughts (such as images of Samara from The Ring, thoughts of me ripping paper off the wall, hurting people around me, engaging in inappropriate sexual behavior). I tried Lexapro, but it only made me more anxious, constantly thinking about taking the potential effects of medication. I tried therapy, but the therapist obviously wasn’t trained in treating OCD; he didn’t even characterize my intrusive thoughts as OCD. I tried mindfulness meditation, reading books on meditation, and going to church, and after months, the anxiety abated.

Time passed and the intrusive thoughts lessened and I almost felt like my old self again by mid- 2018. Up until this point I still never read up on OCD besides on Wikipedia. I always thought what I experienced “felt like OCD,” but I understood OCD to be behavioral, such as handwashing, so I thought maybe I had a more minor form or something because I’d never heard of people with my symptoms.

Then I relapsed in May 2019. I had an intrusive thought of a voice screaming, which made me anxious. Many mental checks and reassurances later, I found myself in my nightmare of a full-blown relapse. At its worst, I found myself crying from anxiety on a weekly basis, and I was worried I was coming down with depression.

Then during an up period in October, I felt like reading about OCD, so I googled, “Best OCD book” and came upon Overcoming Unwanted Intrusive Thoughts: A CBT-Based Guide to Getting Over Frightening, Obsessive, Or Disturbing Thoughts by Martin N. Seif and Sally M. Winston. The title sounded just like me, which prompted me to Google, Youtube and read books on OCD. My mind was blown. Finally understanding what OCD is, how it’s treated, and that all these things I had experienced was OCD, provided immense relief. So much so I thought maybe this was all I needed to know to be better.

I’ve read a lot of material on OCD to better understand it, but I still haven’t given ERP a consistent go yet. Because I’ve still been anxious from time to time, I‘ve made a chart of all my obsessions and compulsions to see where I need to focus on. The most bothersome areas seem to be the intrusive thoughts, and worrying about my anxiety returning (anxiety about the anxiety itself). I’ve noticed that my violent, creepy intrusive thoughts usually only bother me when I’m already feeling anxious to begin with. They will have that extra edge to them. And I’ve noticed that it bothers me when I feel that cloud of anxiety but can’t figure out what it was caused by (likely mental compulsions I hadn’t been aware of).

So last week I went to see an OCD therapist to see if she can better shed some light on this for me and help me develop an effective exposure plan. To my disappoint, this lady talked so much, it was hard to get some sentences in before she would just go on and on again mostly about common sense anxiety stuff or stuff I’ve already read during my OCD research.

So now I’ve been reading further, just trying to gather more information to inform my self-implemented exposure treatment. I do have insurance, but it seems hard to find OCD specialists around me that are covered, and out-of-pocket seems quite expensive (about $150 per session here in New Jersey, USA). And I’ve become kind of disappointed in therapists in general.

Any insight or tips would be appreciated.

[MothFir]

Hi and welcome. I'm afraid I can't offer too much advice because I don't have many problems with intrusive thoughts like you describe - I'm usually more on the checking/contamination/scrupulosity end of things.

However I would recommend giving medication another try, if Lexapro was your only experience. I have never tried that one but have been on two other SSRIs. The first was mediocre but switching to the second helped take the edge off my obsessions with few if any side effects. There's no magic pill for OCD, but medication seems to make ERP easier and more effective, at least in my case. I reduced the dosage to almost nothing a few years ago, and noticed I was having more and more relapses. My latest relapse has been a doozy but I've been making progress since increasing my medication a few weeks ago.

I also just started therapy (after having OCD for decades) and the first session went pretty well - the therapist is quite familiar with OCD and spent 1.5 hours listening to my various issues (felt bad for her, but she was getting paid...) So we'll see how it goes, but so far it seems like a better experience than yours. Maybe there's at least one or two other people around you could try?

My only other suggestion would be to try a local support group if there's one anywhere near you. I tried that for the first time recently as well and found it pretty rewarding. OCD can be isolating, and though I'm naturally an introvert, I enjoyed some time with people who could actually understand what was going on in my head.

Otherwise it sounds like you're being pretty proactive. Hopefully someone with more experience with violent and intrusive thoughts will chime in here with more specific advice.

[larzche in reply to MothFir]

Thank you for you reply. I'm not really open to medication right now because I feel like my OCD isn't debilitating, but will consider trying another therapist. I wish my therapist would've just started by listening to my concerns like yours!

I actually was planning on going to a support group on Wednesday, but backed out last minute. I'm gonna go to the next one in two weeks.

[Selesnya]

If you want to look for OCD specialists in your area, I would start with this search at the IOCDF:

iocdf.org/?s=nj&post_type%5...

It looks like there are a number of therapists, depending where in NJ you are located.

It is extremely helpful to have someone guide you in figuring out how to do ERP for your specific content that you are struggling with. If you want to look for more specific ways to approach ERP or your particular OCD content, I think that you could get a lot out of The OCD Stories podcasts. I would check for episodes with Steven Phillipson specifically.

With regard to ERP, what are the activities that you have the hardest time engaging in because of the content of your OCD? That is where I would start with ERP. Try to reclaim as much of your life from OCD as you can. Don't let the uncertainty and doubt win and dictate your actions.

[larzche in reply to Selesnya]

I actually have used IOCDF. That's how I found the therapist I saw, as well as a support group I'm planning on checking out.

I did come across OCD stories on YT. Will check it out. Thanks for the recommendation.

I don't think there are activities I have a hard time engaging in necessarily. I can go about my days just fine. Just I take a longer time doing things, and I find myself thinking a lot.

I found a great this great article on common pitfalls in ERP (ncbi.nlm.nih.gov/pmc/articl... that explains how ERP usually needs to tackle your CORE fears. The best I can come up with is that I fear that I will go nuts, or that the anxiety will keep coming back. So I'd like to see a therapist to help me figure out where my focus should be.

[Hidden]

Hi, I am also new to this community, and just joined a few hours ago myself.

I started to read the stories, and just felt so sad hearing about all the suffering everyone is going thru. It seems like so many stories are so alike, and yet so different. My situation is, my beautiful granddaughter that is really suffering with this horrible disease. She has had this for 5 years, and it is just heartbreaking to watch her suffer, and feel so helpless at the same time. She has search the disease, and found a new treatment for ocd with great results. The name of the treatment is called TMS,( transcranial magnetic stimulation ). You might want to look it up. I am not sure as to where it is available for you. It is FDA approved. Her ins. would pay for the treatment, but only if she tried medication first. She is not wanting to try meds.

I do know that some counselors are not that great, but I never give up trying, and you should not either. Have you tried any christian counselors ? Maybe start there. I went online myself and did a search for her. Some of them do charge on a sliding scale. I really look for someone who has compassion. Without that, I don't want them to counsel her. My heart goes out to you, and my hope is that this awful disease will be cured some day soon. Until it does, I will just keep on going, and do everything in my power, as her grandmother, to love her through this. One other thing I just did is this. I went online to thrift books, ( a discount book store), and ordered a book called, Brain Lock, ( free yourself from ocb ) It only cost me $4.69 plus tax. I am going to see if this book helps her and me. I know how very hard this is to get some relief, but we have to" keep on keeping on". sending all my love to you, a gramma.

[larzche in reply to Hidden]

Thank you for your kind reply. I wish your granddaughter the best in her OCD recovery journey!

I would recommend Jonathan Grayson's book, "Freedom from OCD" if you haven't checked it out yet.

[Hidden]

I would like to welcome you to the OCD Support Group.

We are here battling OCD together.

We provide each other support, help and compassion.

I am sorry to hear that you are going through a difficult time.

I have checking and intrusive thoughts symptoms.

Sit with the anxiety, and the feared consequences.

The anxiety will be high, but will slowly lessen.

Later, when the obsessive thought keeps popping up, then observe it as an OCD thought.

Do not interact with the thought.

The thought will lose importance, and it will slowly fade away.

Hope this helps.

[larzche in reply to Hidden]

Thank you for the welcome. Sitting with the anxiety without judgment is difficult because my autopilot response is to start thinking, but I know it will get easier with time.

[Tcba]

Welcome to this forum. It is a good one. I, too, was sucked into the OCD spiral most by intrusive (harm) thoughts experienced postpartum after my son was born 37 years ago. Now, the birth of my first grandchild is imminent, so OCD worries are spiking. I go to a great therapist who is specifically trained to treat OCD. She has helped me to understand that it is not about the content - in fact, the content of your OCD is meaningless. It hooks you, because it is about things that you most value. Desipurple’s recommendations really work and are stressed in the excellent book by Winston and Seif that you read. Hang in there. Keep looking for a good OCD therapist. I also recommend the IOCDF conference every year. It is outstanding. You will feel like you are with your tribe. This year’s is in Seattle, which is cross country for me, as well, though I plan to go with family and extend it into a vacation. The 2021 Conference, though, will be in New York City. Again, welcome to the OCD community!

[larzche in reply to Tcba]

Thank you for the welcome and recommendations! I will keep looking for an OCD therapist.

[Purl1952]

Hello and welcome!! I am an intrusive thought sufferer sometimes called “Pure O”. I would highly recommend Chrissy Hodges on Utube. And don’t give up on finding the right therapist. It is essential to have someone to guide you through Cognitive Behavior Therapy and ERP. I’ve also gotten lots of relief with Zoloft. You are not alone!

[larzche in reply to Purl1952]

Thank you for the welcome! I did start watching one her videos. Will be looking for another therapist...

[Tinkering]

Hello,

You are not alone. The people who have OCD can all understand your journey . It is not easy at all. Try the OCD foundation site to look up therapists. It is also difficult to find someone who is trained well in ERP. Be well.

[mazkii]

Hello. I'm glad you find Jon Grayson's book useful. Although I've been fortunate to be spared (so far) the pain of intrusive thoughts, I've heard from a number of professionals (that work solely with OCD) that Stephen Hayes "Acceptance and Commitment Therapy" book can be useful for learning to manage intrusive thoughts. Good luck.