I invited an adult with a neuroimmune disorder onto the podcast to discuss his experience and provide listeners with some insight on what children with PANS/PANDAS and other neuroimmune conditions may not have the words to describe. This special guest happens to be my husband, Ed. This episode is part 2 in a 3 part series. Next week, you’ll hear me discuss my experience as a caregiver.

I couldn’t possibly capture the vulnerability and intimacy of this conversation in a short summary. This is an episode you are going to want to listen to for the full impact. 

Keep Reading or Listen on the Podcast

Acute Onset is Difficult to Define

Ed and I discussed this criteria for diagnosis that often is difficult to pinpoint, and is often not clear cut for families struggling with neuroimmune issues to define or recognize, especially when there are so many other factors they are managing. We looked at how some clues about his immune response have been there from the beginning.

Giving Voice to Baffling Behaviors

Not only does Ed give voice to the internal turmoil of living with a neuroimmune disorder, he makes the experience come alive for us as he uses metaphor to describe his lived experience.

He shares: 

“It’s my wild horses all the time. Even when I’m presenting completely normally for the outside world, I am constantly managing these horses. They’re not even a team–they’re wild horses with ropes around their neck, and I’ve got 15 of them in my hands and I’m constantly trying to hold those back from just dragging me through the mud. And sometimes I lose control of them, and that’s really what it feels like in those moments. So I guess I never really thought about that right? Looking at a kid and even when they’re doing well, they’re probably trying their best inside to keep their horses from dragging them through the mud.”

He also shares his response to caregivers’ desperation to reach their child while struggling to find them in the midst of an immune flare or baffling behavior:

“I was jumping up and down inside myself screaming, I’m right here. Can’t you see me? Can’t you hear me? I’m right here, please help me, please help me out. I was sitting in eye of the hurricane, and everything was calm, and everything was spinning around me. Every time I’d reach out to do something, my hand would get hit by one of the malfunctions that my body was giving me. Whether it was memory, whether it was speech, whether it was anxiety, panic attacks, any of that stuff, every time I tried to get out and find a way to be normal and be me, I just I couldn’t, I couldn’t. And it didn’t matter how hard I tried. It didn’t matter how hard I asked for help. I just couldn’t find my way out of the woods. I needed someone to come in and take my hand and lead me out”. 

What Really Helps

I asked Ed what kinds of responses help when he’s stuck in the metaphorical woods, and he shares honestly about the ways that are helpful for caregivers to show up and the ways that aren’t. You’ll have to listen to hear him give me a grade on how well I do at this!

The Dysregulation – Shame Cycle

It’s impossible to experience this intensity of dysregulation and not have it be coupled with shame. Ed and I discuss this cycle in our own family, offering compassion to the very human relational experience of dysregulation, shame, rupture and repair. 

To hear more of the powerful, poetic, and insightful words Ed shares to help caregivers understand this experience, listen to the podcast or read the full transcript below.

Listen on the Podcast

This blog is a short summary of a longer episode on the Parenting after Trauma podcast.
Find the Parenting after Trauma podcast on Apple Podcast, Google, Spotify, or in your favorite podcast app.
Or, you can read the entire transcript of the episode by scrolling down and clicking ‘transcript.’

Robyn

Would you like to explore a complete paradigm-shift on how we see behavior? You can watch my F R E E 45(ish) minute-long masterclass on What Behavior Really Is and How to Change It.

Just let me know where to send the links!