PANS and PANDAS are truly traumatic illnesses. Not only is there the sudden unexpected onset, where a formally typically functioning individual may develop hours worth of rituals, horrific persistent intrusive thoughts, and a tidal barrage of other neurological and psychiatric changes. There’s also the trauma that comes from the repeated invalidation we may face. When people try to tell you that your condition ‘doesn’t exist’ or isn’t a ‘valid diagnosis’, it hurts. It wasn’t a coincidence that we lost ourselves and became plagued with these symptoms at the same time as or straight after having an infection.
We don’t go through intensive treatments, just to get told that our condition ‘isn’t real’. We don’t spend thousands on seeing specialists, just to get told that our diagnosis ‘isn’t valid’. Evidence shows that it is. PANS and PANDAS are valid diagnoses that specialists at Stanford Medicine’s Immune Behavioral Health Clinic have been helping children overcome for some time. It hurts when you endure the most terrifying, traumatic, experience of your life - one that shakes you to your core, and then people try to tell you that it’s ‘invalid’. That is not an exaggeration by the way. PANS and PANDAS are debilitating. Yet there are still people sharing misinformation on the conditions and increasing the stigma which already haunts us enough. You never have the right to tell us that you ‘don’t believe’ in our illness.
We also wish that we didn’t believe in it, we wish that it was all a lie. We wish that a simple infection wouldn’t send us into a relapse of nearly unimaginable suffering - but we don’t have the option to ‘not believe’ in it. We have lived this nightmare first hand. So think - before you recite what you read from unreliable sources, before you quote outdated ideas, think how what you say is impacting the PANS/PANDAS community.
Think about a child being denied life-changing or potentially life-saving care, because their family saw you sharing misinformation on the conditions and didn’t think it was worth considering PANS or PANDAS as a potential diagnosis for their child. People sometimes say that you will never fully understand a condition until you live with it or care for someone who has it, and sadly in relation to PANS/PANDAS it rings true.
We just need help and support from a community of people who understand us, so it doesn’t help when people begin doubting our diagnosis, or seeing us as ‘outcasts’ who have been ‘misled’ into thinking an infection could be triggering our symptoms. It is not just a belief, we know. It is not typical to develop debilitating OCD overnight, especially not alongside serious neurological symptoms such as developmental regression, loss of coordination, major sensory processing issues, late onset hyperactivity, personality changes, seizures, brain fog, a sudden steep decline in academic ability, urinary incontinence, etc. We may suddenly lose ourselves and struggle to comprehend the world. We may have to relearn the skills which we lost. Invalidating and disbelieving us when we are already enduring a waking nightmare or have survived it NEVER helps.