PANS + Lyme: Recovery and 8 Years of Misdiagnoses

This week has been OCD Awareness week. Up to this point, I haven’t discussed my OCD very much, but I think it’s time to change that. An overnight onset of OCD is the hallmark symptom of PANDAS/PANS—which I had almost eight years ago.

For six years, I concealed from my parents and psychologists the torturous obsessions that ran through my mind because I was so afraid of and ashamed of them. Not all OCD is caused by PANDAS/PANS, but no matter what causes OCD, it is a devastating and frightening disorder when left untreated—especially when you don’t know you have OCD, as was my case for six years.

Because I have PANDAS, I can tell you the day that my OCD started. (With non-PANDAS/PANS OCD, the onset isn’t so sudden.)  I was eleven. I went to bed one night, and while reading in bed, a terrible blasphemous thought entered my mind. Most people would have let it go, but I couldn’t.  In an instant, my whole world was turned upside down as my body produced an autoimmune response against my brain that gave me PANDAS, and thus, OCD.  I began having the first panic attack of my life, because I suddenly had an irrational fear that the one intrusive thought had doomed me to Hell.

What could I do? I was eleven years old, but I couldn’t bring myself to tell my parents my terrible fate of eternal damnation. I couldn’t tell them about the thought either, because then they would know how bad of a person I was for having it come into my mind in the first place. There are no words to describe the horror that I felt, and the worst part was the feeling of being alone—that I couldn’t tell anyone and that even God had turned against me. There was no hope.

I was not doomed to Hell of course, but living with PANDAS-triggered Scrupulosity OCD sure felt like it. Before long, my mind was a constant cacophony of intrusive blasphemous thoughts that I hated. Every time I read a book, the words morphed into even worse thoughts. When I walked, the rhythm of my steps became an obscene word. It got to the point where I literally wouldn’t write or say anything because everything turned into an intrusive thought…

Even if I answered a question someone asked me by saying “Yes,” I was afraid I would actually be affirming a “bad thought”—even if the conversation had absolutely nothing to do with my thoughts. If I said “No,” I might cancel out a “good thought,” which would have been just as bad. The worst feeling was wondering whether or not I had “cancelled out” the bad thoughts properly, because sometimes, I would lose track of my mental rituals. One time, I accidentally said one of the intrusive thoughts out-loud, and I worried about whether I cancelled it properly for the next five years.

At eleven years old, I thought I had to be going crazy. I couldn’t understand why it seemed like my mind was full of thoughts that weren’t my own; I wondered if I was possessed. I knew that no one should be afraid of the things I feared. At the same time, I felt like I had to keep following the rules and doing the compulsions just in case they were rational. What if everyone else was crazy and I was sane?

With OCD, there’s always another what-if and another precaution that you have to take in order to neutralize an obsession. For some people, the obsession is getting sick or getting someone else sick, so they wash their hands a particular way and a certain number of times in order to stop that bad thing from happening.  For me, the obsession was Divine judgement, so I become consumed by morality and carried out silent mental compulsions to “cancel out” any kind of immoral thought that entered my mind. It was as if I always had to decontaminate my mind. Of course, it was never really decontaminated, because the intrusive thoughts would come back as soon as I tried to stop them.

So how in the world did I escape from that prison?  When I was seventeen, in the second worst OCD flare of my life, for the first time, I began to ask a different what-if… What if these thoughts were not my fault? A lightbulb went off. I remembered reading an article in Readers Digest that said OCD involved repetitive unwanted thoughts.  I googled OCD, and a chill ran down my spine as I read a description of the Scrupulosity type and realized it was everything I had been experiencing since I was eleven. It took a couple weeks, but I eventually worked up the courage to tell my parents I needed help.

Today, I can say that, thanks to therapy, I am 90% free from Scrupulosity.  Because I have PANDAS, my OCD gets dramatically better and worse over time, and I still have contamination OCD.  Even so, thanks to Exposure therapy, my OCD has never gotten as bad as it once was.

Somewhere, in the middle of my OCD mess, I met a loving God that wasn’t just waiting to smite me the moment I didn’t cancel a thought properly. When I realized who God was, over a few months I was eventually able to stop my mental rituals on the leap of faith that they weren’t necessary. It was terrifying, but the moment I stopped believing the intrusive thoughts had any power was the moment I was set free.

If I had known sooner that OCD could take the form of intrusive thoughts and mental rituals, I could have had a better adolescence. And I certainly would have figured out I had PANDAS much faster. For my parents, it was horrifying for them to realize I had been mentally tortured by OCD for six years without them knowing.  As my mom put it, “You were too strong for your own good. Most kids would have eventually cracked under that kind of pain.”  I know there are a lot of other strong people out there. How many others are silently locked inside a prison that exists in their mind?

Whether one’s OCD is caused by PANDAS/PANS or not, I want everyone to know that there is hope. No, you’re not crazy. And no, you probably aren’t the only person who has that obsession.

If I ever have children, we will talk about OCD and talk about thoughts that come into their minds that upset them. I will tell my children that any thought that enters their minds that they hate isn’t their own. I will tell them that they aren’t responsible for thoughts that happen against their will. I will tell them that even if the bad thoughts were their own, God wouldn’t love them any less. And I will tell them that God understands how the brain works and isn’t intimidated by intrusive OCD thoughts—or anything else that can be thought.

My parents did everything right—they sought out the expertise of psychologists and counselors, but I was so afraid that I hid my OCD skillfully. The only thing that could have gotten me help sooner would have been if someone asked if I ever had repetitive, unwanted thoughts.  Why did none of the professionals ask? People need to know that OCD can be completely hidden in the mind—it’s so much more than a personality quirk or germaphobia. People need to know that they’re not alone in fighting thoughts that they’re too ashamed to mention. People need to know that OCD is treatable.

Comments on: "I Had OCD for 6 Years… And Didn’t Know" (11)

  1. […] the first day I became ill, shame was a mainstay in my life with PANS… Shame about irrational fears that no one understood. […]

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  2. […] three of the major PANS exacerbations I’ve had in the last ten years, I’ve not only dealt with crippling OCD, anxiety, depression, cognitive problems, and movement disorders, but I’ve lost my very self; […]

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  3. […] to me, they were shocked (as was I) to learn that OCD had been completely hidden inside my mind for six years.  (Sadly, it is quite common for a person with OCD to go undiagnosed for several years.)  Although […]

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  4. […] but when my mind is stilled and the lights go out, I’m haunted by my past. I can’t undo the six-year torment of facing OCD all alone, too scared to ask for help. I can’t forget the daily despair of knowing I was losing […]

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  5. […] could be turned upside down in one moment. I shouldered the burden of upsetting intrusive thoughts for six years without telling anyone. I learned what it was to live in constant pain—physical and emotional—and to go on in spite of […]

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  6. […] way I see it, bad things happen in bed… My OCD onset happened when I was eleven while I was in bed. My worst panic attack ever and the start of my […]

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  7. […] of how bad the pain was while accepting that I would never get better—just like I did with the intrusive thoughts until I was […]

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  8. I have a 12 year old who has recently been diagnosed with PANDAS. I am taking in every single word that you say. Thank you. I am going to ask him about the unwanted, repetitive thoughts. I’m sure he has tried to tell me this and I just haven’t understood. Now I do – again – thank you.

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    • Hi Janet! I’m glad that you found this post helpful. That’s why I’m writing this blog. I have another post coming out tomorrow that you might also like that talks about what I wish I could’ve explained to my parents during the worst of my OCD.

      I’m sorry to hear that your son has PANDAS, but I’m happy that you at least have a name for what’s going on. Depending on what kind of OCD he has and how bad it is, he might resist talking about the thoughts at first, but don’t give up on asking him. Please be sure to tell him that any unwanted thoughts he has are not his fault, and he is not responsible for their content. He might be embarrassed to tell you what kind of thoughts they are or why he does certain compulsions–they could be about anything, and by definition, he knows on some level that they make no sense. It helped me a lot when my parents reminded me that it was not me, but OCD creating the thoughts, making me anxious, and telling me I had to carry out all the compulsions.

      Thanks for the comment, and best of luck to you both! Let me know if I can do anything to help, and feel free to get in touch any time.

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  9. Thank you for this AMAZING post. I am sure you will help so many people who read this. You do a great job of portraying the suffering that goes along with this often misunderstood illness, and also bring up the many issues that need tending to in order to get people the help they need sooner rather than later:

    “The only thing that could have gotten me help sooner would have been if someone asked if I ever had repetitive, unwanted thoughts. Why did none of the professionals ask?”

    EXACTLY! We need better education and awareness of OCD, not just for the general public, but for professionals as well. Thanks for doing your part and I am so glad OCD no longer rules your life!

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    • Thanks for reading my blog! I’m glad to know that I accurately portrayed what it’s like to live with OCD. It can be hard to explain to people. Thanks for everything you’re doing to raise awareness for OCD, too!

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