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The 5 Emotional Stages of Our Daughter's PANDAS Diagnosis

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I think with any major life event, we have to go through an emotional processing of sorts, like when my daughter was first diagnosed with PANDAS. While PANDAS is not life-threatening, it has very much been life-altering for us. Expectations change. Normalcy seems to disappear and can be replaced by survival mode.

Here’s what the emotional process has looked like for us:

1. Confusion.

For us, the PANDAS diagnosis was not a gradual thing. It was like turning off a light switch, because it suddenly felt like we were groping around in the dark, fearing each new step. My daughter seemed just as confused. She would hear herself scream out words inappropriate for a 4-year-old, and then feel horrible about it, crying, “Mommy, why do I say those things?” In a PANDAS flare, it’s difficult to know which way is up.

One thing that does help to keep me grounded is knowing every step we take is a good step. Even if we step backwards, at least we are taking steps.

2. Denial.

Every parent of a child with PANDAS I have ever talked to has said, “I knew something wasn’t right.” As parents, we are like the stage crew at a play. We see and hear everything. But there is always a big audience out there who only sees a well-rehearsed portion of our lives, and you might find denial is a very common theme among them. I’m not trying to cast any blame though. My daughter has done and said things in the middle of a PANDAS rage that may be difficult for others to understand. I know she lets her guard down with me because she trusts me more than anyone else, which is something I try and remind myself of whenever others don’t seem to realize the challenges she faces. Denial may not be a stage every parent goes through, but I’ve found it surrounds us on a daily basis.

3 & 4. Depression and Anger.

When my child is flaring, I never know what will set her off. As a fallible human, I get angry at her, which depresses the heck out of me. My brain knows she cannot control what she is doing or saying, but the emotional side of me is hurt by hearing my daughter scream that she hates me.

Most of all, though, I’m angry at PANDAS. I’m angry at the condition/disease/syndrome/whatever you want-to-call-it with the dumbest acronym known to mankind. That said, though, I placed depression first for a reason. While they may go hand in hand — depression causes me to want to stagnate. But anger is what propelled me to search for a diagnosis. Anger is what made me look for answers when there weren’t any. Anger is what caused me to search for a doctor who would help diagnose and treat her. Anger is what eventually led me to acceptance. Anger may be a natural, unavoidable response to difficult circumstances, but it’s our choice as to whether we allow it to eat us up inside, or let it help propel us forward into positive actions.

5. Acceptance.

Ironically enough, this last stage was the easiest. I think we parents hunger for a diagnosis. A name for the enemy who is making life challenging for our children. But most of all, we yearn for a treatment. A plan to help our child. Acceptance can not only help our children, but it can get us out of that tailspin and allow us to start steering the plane again. Once we accept, we are able to research — and many of us do for hours and hours — and advocate for our children’s care. For others though, this may be the hardest stage of all. It can be hard for people to accept a disorder that ebbs and flows, for which there is no solid diagnostic test and no set cure. Treatment is different for everyone, and what works for one child may or may not help another. That’s a hard pill to accept and swallow, but for the sake of our children, we must.

We parents of children with PANDAS must accept our “new normal.” Those who know a PANDAS child must learn to accept that PANDAS is real. That PANDAS is more life-altering than they may have imagined. They must accept we are doing the very best we can to help our children.

I realize acceptance as a parent may be easier for us than it is for those around us. But I promise that as my friend/family member/co-worker/fellow parent/complete-stranger-who-questions-my-sanity-at-the-grocery-store — the payout of your acceptance can be huge for both of us. I promise, because beyond all the compulsions and chaos is a beautifully strong child fighting a battle many of us cannot even begin to imagine.

Image via Thinkstock.

Follow this journey on The Wondering Widow.

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Originally published: January 18, 2017
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