PANS + Lyme: Recovery and 8 Years of Misdiagnoses

What I Have to Believe…

In the last two years, nothing has gone as planned.  I was supposed to go off to college and start my life again. I was supposed to leave behind the pain of the OCD I had seemingly conquered last year just before my freshman year. I was supposed to move away to let my career take off.  But instead, I’m sitting here about to take another nap because no matter what I do, I can’t keep my eyes open.  I never could’ve imagined that this is where I would be right now…

If I have to pick one thing that is the worst part about having PANDAS, I think it’s the fact that it makes me feel like I’m not myself anymore. I feel like I’m only a shadow of who I used to be—even of who I was a year ago. I don’t even enjoy my favorite things. I used to be the kind of person who loved to go out and do things and have adventures, but now I’d rather just sit at home by myself or sleep. I can’t even make music sometimes now, and for me, that is heartbreaking.

Most days, I manage to make myself get through things, and I’ve even managed to keep good grades. But there’s no joy or time for friends. I’m surviving—not thriving like I had planned to be. I’ve been cheated out of a normal college experience so far.  For that matter, haven’t I been cheated out of a normal adolescence, since I’ve had some degree of PANDAS since I was eleven?

But I can’t think like that. No matter how badly I want my life to be different, this is the way it is right now, and being bitter about it won’t do me any good. No, I have to just keep thinking about the fact that I’m one of the fortunate ones who figured out I had PANDAS. I have to remind myself that it isn’t permanent and that I will get better.

Still, sometimes, I get really mad about where I am in life. I had everything going for me until this summer—I was on the fast track in my career. But it seems to all be slipping through my hands now. I feel like this disease is just such a waste of my time, talent, and personality. Why did this have to happen?

I don’t think I’ll ever have an answer. But at least I have a cure; my doctor has repeatedly told me that I’m going to get 100% better—even though it could take a year. At my recent follow-up, I told her about my continued depression and OCD and sleep issues, and she said it meant my brain chemistry is still “messed up.” Also, It hasn’t even been three months since the IVIG, so the fact that my chorea has improved as much as it has is a great sign. I have to hang onto that…

My doctor has treated hundreds of cases of this, many of which were worse than mine, so most of the time, I believe her when she tells me I’m going to get better.

But of course, living with anxiety makes it difficult to believe sometimes. Every time a symptom comes back, so does the what-if monster: What if it doesn’t go away this time? What if it keeps getting worse? What if I don’t actually have PANDAS? What if it really is “all in my mind” like so many doctors have told me? What if I really am crazy?

I’ve been in a wrestling match with that monster this week, but it can’t win—and it won’t, because I’m just going to keep dragging myself through each day until I get better.  I just have to believe that I will…

So, readers… What is your what-if monster? How do you fight it?

Comments on: "What I Have to Believe…" (5)

  1. […] issues and psychiatric/cognitive problems.  Although the sleepiness returned to a more mild extent two months post-IVIG, it never reached the severity of before, and after a second IVIG, it disappeared for […]

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  2. Every time I PMS, I have the same intense thoughts, obsessions, and ruminations coupled with severeow mood. What makes this awful is not the thoughts themselves, because I *know* that it’s PMS that’s fuelling my mood. It’s the what-if monster (that I call the Mean Voice) that whispers: what if this time it isn’t PMS? What if this time you truly do feel all these things?

    That’s what makes OCD so tough for me. Fighting that what-if monster. It tries to convince me to drive away all of the people I care about the very most. When all I want to do is be closer to them.

    Thank you for sharing this. Keep fighting and keep reminding yourself that it’s the fight which creates the light at the end of the tunnel. If we don’t want to get better, we won’t.

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    • Thanks so much for you comment! I agree that the what-if monster is what makes OCD so hard. But we can definitely beat it if we keep going and learn to pay no attention to it… You’re not alone in this.

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  3. Sounds like the typical ‘ what ifs’ of OCD. Don’t let the ‘What ifs’ take over. Try the ‘What cans’ instead. What can I do today that I can handle? Who can I phone today to cheer me up? X

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