Discover Top Posts Tagged with #ticdisorder

Stop The Invalidation, Stop The Stigma.

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 something that was thought to be true years ago and has now been dismissed, 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. If you cannot be validating, open-minded, or supportive, it’s best to just be quiet.

#OCD #pandas #PANS #PANDASsyndrome #tics #ticdisorder #tourette

I have a question for the tourettes and tic disorder community.

Do any of y'all have a tic that involves kind of tipping backwards? And if you also have balance issues, how do you tell losing your balance from a to like that?

#actually tourettic #tourettes #tics #tic disorder #ticdisorder

my top 10 worst places/times to tic

inspired by multiple other posts that i’ve seen on tumblr about the topic.

“And now, a moment of silence.”

church.

public bathrooms.

school.

libraries.

underwater (jaw tics and sniff tics)

showers and baths (slipping!!!)

weddings. not that i’ve ever been in one, i’ve seen a lot.

in a car (very cramped, and seatbelts always locking)

grocery stores- with a bunch of strangers staring at you.

#tourettes #tourette #tourette syndrome #tourettesyndrome #ticcing #tic #ticdisorder #actuallytourettic #actuallytourettes #tourettic #disability #ableism #neurodiverse #neurodivergent #actuallyneurodivergent #disabled

Me: *Aggressively shakes head because of intense part in music*

Dad: *Looks at me as if I am crazy*

Me: Yes?

Dad: *Looks away*

#tics #ocd #music #ihatemyself #whydoidothis #crazy #ticdisorder #skootskoot

Why I 100% support self diagnosis:

Doctors aren’t fully trained on all conditions. They don’t see what a patient experiences on a daily basis and they don’t see how much certain conditions impact their lives.. Doctors only get a few lectures on the diagnostic criteria and treatment of certain conditions but they are not shown different peoples experiences and they often turn to stereotypes. Doctors abuse their power and try to send people to abusive therapies (such as ABA to try to make people on the autism spectrum act more neurotypical). Doctors can also be extremely racist, sexist and transphobic which affects how they treat a patient. Waiting lists for mental health services and neurological services are extremely long so it will be a long time before someone can even get a diagnosis. Some people in the USA cannot afford to get an appointment and insurance may not cover it. Some people do not have supportive parents or family members so may find it difficult to get diagnosed. It can be harder for people who were born in a female body to receive and Autism or ADHD diagnosis as it affects people who were born in a females body differently .Some doctors don’t even believe ADHD is a real thing. Some doctors abuse their power and are patronising to their patients and the patients parents. Some people are unable to access mental health services at all because in the UK , to get referred to adult mental health services you have to do a telephone interview , which can be impossible for someone with social anxiety, or anyone who is non-verbal or deaf or anyone with auditory processing difficulties and nobody is allowed to do it for you. Some people aren’t able to leave the house due to a disability, such as agoraphobia, Tourette’s, social anxiety, panic disorder or any chronic illness, therefore can’t see a doctor.

Even if someones self diagnosis is incorrect, then i would rather they get support from a community that accepts and supports them. I have Tourette’s and autism and i fully accept and support self diagnosis , and even if someone self diagnosed these conditions wrong, I would still be happy to help them.