Indie’s Story

Meet Indie, a 27-year-old artist and writer from Montgomery, TX, who has spent over a decade navigating the complexities of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Indie’s story is one of resilience and self-discovery, shaped by years of misdiagnoses and battling misunderstood symptoms. Today, she shares her experiences, struggles, triumphs, and the lessons she’s learned along the way.

How old were you when you first began experiencing symptoms of PANDAS or PANS, and which disorder do you have?

I first began experiencing symptoms at 14 years old, and I have PANS.

What symptoms did you have, and which ones do you continue to experience?

Initially, I had paralysis, psychosis, paranoia, hallucinations, rage, and an eating disorder. The symptoms I still experience today include OCD, Tourette's, seizures, dystonia, ARFID (Avoidant Restrictive Food Intake Disorder), dyscalculia, dysgraphia, aphasia, epilepsy, and dissociation.

Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?

PANS changed me to my core by making me a fearful person when I used to be so carefree. These symptoms have held me back from accomplishing everything I’ve wanted to accomplish.

Walk us through your medical experience. How many times were you misdiagnosed, how long did it take for you to get correctly diagnosed, and how did you navigate all of this while experiencing your symptoms?

I was misdiagnosed for 14 years. I was told I had bipolar disorder, Dissociative Identity Disorder (DID), Munchausen's, and Conversion Disorder. I put my everything into each of those treatments and absolutely none of them helped.

Were you able to receive insurance coverage for your treatment(s)? How hard did you and your family have to fight to get coverage?

I fought to get IVIG covered for almost a year, but it took two stays in the ICU that pushed insurance to cover it.

What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?

You are valid. What you're going through is valid and you're not a faker. YOU know your body best. If the label feels like it's wrong, it is.

What is your dream job and vision for your future?

Being a writer and an artist! I want to sell my fiber arts and write books. I just want independence.

Can you share any strategies or tools that have helped you manage or alleviate your symptoms?

Honestly, the protocol of antibiotics and steroids is what manages my flares, but I know that looks different for everyone. Also, medication, support groups, and therapy for anxiety and ocd!

Were there any particular moments or experiences that made you feel understood or supported during your journey?

When a doctor told me I wasn't crazy and she believed me. That changed everything. 

Have you found any resources or communities (online or in person) that have been helpful to you as someone with PANDAS/PANS?

TikTok! I have found SO many lovely fellow fighters through there.

How do you explain PANDAS/PANS to others who may not be familiar with the condition?

I would explain it as my fighter cells were given the wrong orders and attacked me instead of my illness.

Is there any specific moment or turning point in your treatment that gave you hope or made you feel like progress was being made?

When the doctors finally realized I wasn't faking my seizures and they decided to treat them instead of ignoring them.

How do you handle setbacks in your recovery or moments when symptoms flare up again?

I remind myself it is temporary and I allow myself to receive more than I give.

How has living with PANDAS/PANS changed the way you view your own health or how you approach overall wellness?

It has reminded me that healing is not linear and neither is wellness. Everything is connected and everything you consume can affect you negatively or positively.

How did PANDAS/PANS affect your relationships with family, friends, and peers? How did they respond to your diagnosis and symptoms?

I have lost a lot of friends who thought I was making it up. But I have also gained the support of friends and grown stronger connections with the ones who chose not to leave and supported me all the way. I am so grateful for them.

What do you wish people understood about living with PANDAS/PANS that they might not see from the outside?

Symptoms can change rapidly! It's not that we're doing something wrong, it's that our symptoms can change dramatically in a short period of time.

What do you want other kids or teens experiencing PANDAS/PANS to know about their journey?

You're going to make it through this. It's a long journey but it's going to be worth it. 

Do you have a favorite book, movie, or TV show that helps you escape or relax?

I love watching true crime as well as listening to funny podcasts, but I also love rewatching shows like She-Ra and the Princesses of Power, Hilda, Kipo, Spy x Family, and Elsbeth.

What’s your go-to comfort food or snack when you need a pick-me-up?

Ramen!

What’s something about yourself that you’re really proud of?

I’m proud of myself for surviving this. 

Do you have a favorite music artist or song that helps you get through tough moments?

Blü eyes is really spot on with her lyrics, but I have playlists of SO many artists who get me through. 

If you could spend a day with anyone, living or not, who would it be and why?

Ian Curtis from Joy Division! I would talk about his lyrics and ask how he came about them.

What’s your favorite hobby or activity to do when you’re feeling well?

Crochet and drawing. 

Any additional comments (optional)?

Thank you so much for what you do. It's hard to fight this and you hearing our voices is so helpful. 

Indie’s journey is one of strength and perseverance. Her experiences shed light on the challenges faced by those living with PANDAS/PANS, offering hope, wisdom, and a reminder that the path to healing, while difficult, is always worth walking.